44 – Trauma and Chronic Illness with Amani

Posted on 28th September 2023

This episode is an interview with Amani (she/her) all about trauma and chronic illness. We talk about her experiences with chronic illness, connections to childhood trauma, medical neglect and the effects of repeated hospitalisations. We talk about medical gaslighting, prejudice around chronic illness and what meaningful support and solidarity can look like. Plus so much more!

Links & resources from this episode

Find them all at solidarityapothecary.org/podcast/

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Music from Sole & DJ Pain – Battle of Humans | Plant illustrations by @amani_writes | In solidarity, please subscribe, rate & review this podcast wherever you listen.

Transcript
Nicole:

Welcome to the Frontline Herbalism podcast with your host Nicole Rose from the Solidarity Apothecary.

Nicole:

This is your place for all things plants and liberation.

Nicole:

Let's get started.

Nicole:

Hello, welcome back to the Frontline Herbalism podcast.

Nicole:

I hope you've had a chance to listen to the first couple of episodes in this series all about the politics of trauma.

Nicole:

The first one was with my partner Rob all about trauma and addiction, and the last one was with an amazing Abolitionist and Delinquent, capital letters Aiy ana Goodfellow about their book Innocence and Corruption, exploring like youth oppression, age trauma child abuse, like all sorts of things and how we can support young people.

Nicole:

I thought it was really amazing and moving.

Nicole:

I really wish I was joining their upcoming workshop that we mentioned in the episode.

Nicole:

prison visit, sadly.

Nicole:

But yeah, so this episode today is with my close friend Amani.

Nicole:

She is an amazing human being who speaks regularly about chronic illness and kind of living with chronic illness.

Nicole:

and we explore kind of chronic illness and trauma.

Nicole:

So we talk about medical trauma, some of her like explicit experiences of kind of challenges like medical gaslighting and, you know, neglect and bad treatment by kind of people working in healthcare and how, yeah, how kind of things like hospitalizations become kind of normalized for friends and family, but for the you know, are continuously traumatic.

Nicole:

Yeah, we just, we just go deep.

Nicole:

It's a very moving episode.

Nicole:

We talk about prejudice around chronic illness, some of the kind of bullshit attitudes a lot of people have you know, in this kind of, kind of like positivity, new age mindset stuff and how that harms people.

Nicole:

You know, we talk about support and solidarity and how people living with chronic illness are also amazing friends and also offer a lot.

Nicole:

And that it's not just this kind of like one way dependency street.

Nicole:

But yeah, we just, we just really, we just really go there and I'm really grateful to Amani for being like so vulnerable and honest about her experiences.

Nicole:

I think there is a lot of wisdom and also, you know, enraging things too around the medical industrial complex and the systems we're living in.

Nicole:

But yeah, I hope you find it helpful.

Nicole:

I know, I'm sure like a lot of people who sort of engage with the solidarity apothecary have experiences of chronic illness.

Nicole:

It's definitely something I had for several years before kind of you know, doing my clinical training and understanding what was really going on in my body and addressing kind of chronic inflammation kind of and coming out of that maze with a lot of support.

Nicole:

But yeah, I know it is a very you know, very, very common experience for many people and we don't talk about it enough.

Nicole:

And yeah, like I said, I'm just grateful.

Nicole:

to Amani for opening up so much and sharing her experiences.

Nicole:

So yeah, please let me know how you find the episode, what you think about it.

Nicole:

And again, just shameless plug.

Nicole:

My herbalism, PTSD and traumatic stress course is coming this Friday.

Nicole:

Very excited about it.

Nicole:

So yeah, a lot of the stuff that me and Amani talk about.

Nicole:

We explore in the course, like I talk about things like kind of common trauma dynamics, like what makes particular experiences kind of particularly traumatizing.

Nicole:

And we look at things like disability justice and like healthism in the course as well.

Nicole:

And just some of the kind of political context of our experiences.

Nicole:

So anyway, please check that out.

Nicole:

I'll put the link in the show notes and yeah, thanks again to Amani and yeah, let me know what you think of the episode.

Nicole:

Oh, and also, yeah, I guess.

Nicole:

Just yeah, you probably got the impression from this introduction, but just I guess content warning like we do talk about like medical things and also some near death experiences.

Nicole:

And yeah, I think there's also references to psychiatric imprisonment.

Nicole:

Okay.

Nicole:

Thanks, everyone.

Nicole:

Hey, Amani.

Nicole:

Thanks so much for coming on this show.

Nicole:

As people.

Nicole:

maybe don't know actually, like really long term close friends.

Nicole:

And yeah, I really adore you.

Nicole:

You've been an incredible friend to me for so many years now.

Nicole:

But for folks who don't know you, like, please, could you introduce yourself, your pronouns and kind of like any like political affinities or projects or anything you'd like to include?

Amani:

Thank you for that nice intro.

Amani:

I love you to bits, first of all and I'm very honoured to be on this podcast because I'm a big fan of your work.

Amani:

In terms of my pronouns, there's she, there's her, and an intro about me is that, like, I guess I've been political, like, all my life.

Amani:

I grew up, like, super, you know, into social justice with my mum and then obviously carried that on and I feel like Like, I can't work at the moment, and I haven't worked for a long time, so I think I, it's easy to feel like you're not contributing enough, but I feel like I do all I can through like social media and stuff like that, and like, projects through social media is like, how I try to make a difference, and with my health issues that we'll talk about in a minute.

Amani:

I feel like that's my sort of way of contributing to society, I guess.

Amani:

If that answers your question.

Nicole:

Yeah, yeah, that's amazing.

Nicole:

I mean, like, yeah, I think, I think you do loads of stuff, like to support people, like all the time.

Nicole:

you know, loads of that is invisibilized, right?

Nicole:

But yeah, for people who, yeah, who don't know you I know it's a very long story and you've been through a hell of a lot, but if you could just share a little bit for context of kind of what your experiences have been with chronic illness, that'd be amazing.

Amani:

Yeah, so I have, I've actually lost count of how many chronic illnesses I have which is kind of like the joke when you have chronic illness, like you kind of collect conditions and that's definitely been my experience.

Amani:

I would say I probably have like 12 or 13 like hardcore conditions like that involve, just as an example, like I have things like rheumatoid arthritis, like a brain injury, endometriosis.

Amani:

Heart condition, POTS, in surgical menopause, have lots of problems with my bladder and bowel, like I have to catheterize every time I pee and I'm waiting for a permanent suprapubic catheter, have problems with my kidneys, and then obviously, like, also in terms of mental health, I struggle with complex PTSD due to, like, childhood trauma, and then I recently got diagnosed with high masking autism and I'm waiting for my ADHD assessment but pray guaranteed I've got that.

Amani:

So that's just a little summary.

Amani:

Yeah.

Amani:

Yeah

Nicole:

sorry, I'm almost like stunned to silence of like yeah, how, like, how does that feel to you in daily life?

Nicole:

Like, what does that kind of look like for you?

Amani:

Yeah, good question.

Amani:

So I guess most of my life is spent in bed and that's obviously.

Amani:

A complete head fuck in itself.

Amani:

Like, you never get used to that.

Amani:

Like, people...

Amani:

Of course, like, you do get, you get used to how to deal with it, but you never get used to that, especially when you're someone like me who, like, loves life and just wants to, like, eat life all the time, and always have been, and before I got sick, I was, like, just doing so much all the time, and so my life is spent, I would say, like, 90, 95 percent horizontal, and the times when I'm upright, it's not like it's because I'm better, it's because maybe I have, like, you know, my pain has gone from a 9 out of 10 to an 8 or 10, you know, it never goes below that.

Amani:

So you know, I sort of, yeah, do my best to do something nice with the times I can be upright.

Amani:

And that's something new, a skill that you learn.

Amani:

because you have to with years of chronic illness is to push through to your detriment, but in order to support your mental health, if that makes sense.

Amani:

So anyway, so yeah, so my days are spent mostly in bed with like debilitating fatigue and like muscle weakness and dizziness.

Amani:

And then like the severe pain, I didn't use to struggle as much with pain, but then I think sort of over the light last eight years, like that's been.

Amani:

The worst symptom for me.

Amani:

It's just, I wouldn't wish it upon my worst enemy and I've often got, you know, like the trouble with chronic illnesses, you often people are immunocompromised and I have, I'm on low dose chemo for my arthritis and I'm already immunocompromised and that makes me more so.

Amani:

So I obviously deal with a lot of like acute illnesses on top of the chronic illnesses, which is just.

Amani:

A bit of a mess, to be honest, yeah, so that's how my days are spent, but I do get nice, you know, little bits where I manage to go for a swim sometimes, or, you know, but the trouble is that all the life responsibilities fall away, you know, I just don't do them, my flat's a mess, like life admin's a mess, I can't keep on top of those things, because if I've got at all the capacity to leave the house, I will, to get some fresh air, to see friends, like for half an hour, and then I'm back to bed.

Amani:

So yeah, that's a long winded answer.

Amani:

Oh,

Nicole:

bless you.

Nicole:

And like, you used to be like a sort of outdoor education, like extreme sports instructor, right, like back in the day?

Amani:

So yeah, I used to teach like water sports and, like sort of outdoor pursuits and I loved it and I, I was like an athlete, like second in the country for javelin when I was like showing off about that.

Amani:

Just like, you know, I was always captain of all the sports teams.

Amani:

Like I did sports at uni, like sport for social change at uni.

Amani:

Did lots of work in communities and stuff with that and like, you know, I was really set on a cool path, if you'd say, like, with what I wanted to do with my life and obviously that all came crashing down quite epically I would say back in the last year of uni basically, so when I was like 23, 22, yeah.

Nicole:

And I think you've described it before, like, I know when I had chronic illness for like a few years with my rib cage stuff, it was like a full time job, like going to appointments and going to hospital and then recovering from that time in hospital and ordering supplements.

Nicole:

And like that constant, like relentless journey of like trying to get different diagnostic assessments and, yeah, like labels and advocating for medication you need and all of this stuff.

Nicole:

Like it's, yeah, it's like a lot of energy, right?

Amani:

A hundred percent.

Amani:

And I think people, like I say to people who, you know, you obviously understand that part, but like a lot of people I know who don't have chronic illness Like just I say it's a full time job, but I can see in their sort of face They didn't quite get it and you're not gonna get it unless you've been through it Like I do understand but it's very I find that a very lonely part of chronic illness because people are like, you know I've had I once had a therapist who I quite quickly sacked but he was like Oh, I wish I could stay in bed all day making art Is that like and I've had people say things like that to me like that's firstly that's not what happens I make art about like once a month secondly, like Staying embeddled, I would give anything to have a busy, stressful job, or like, have, you know, some sort of situa like, people everyone has, like, challenges, like, but I would give anything to, like, be overwhelmed with busyness, or like, have, you know, things I have to do, like, I just, all the things I have to do are...

Amani:

Surrounding my health, and you get completely burnt out, and I'm sure we'll cover that, but like, you know, you can only advocate for yourself for so long before you get burnt out, and when you're navigating, like, you know, 12, 13 health conditions, all with a different consultant, like constantly battling the medical system, which again, we will cover like, but the kind of people have no idea the strength and exhaustion that is like happens when you have to, yeah, make all the phone calls, emails, chase up.

Amani:

And then also obviously going to the appointments, having to deal with the emotional.

Amani:

aftermath of being gaslit and dismissed and treated like shit and whilst living in severe pain and being at the bottom of your capacity to cope, but yet every single day you have to wake up and cope, you know, you don't get people just as an example, like I take a lot of like pain relief.

Amani:

So like opiates and stuff because of my pain.

Amani:

Unfortunately, I have to, but people think that means that like, I get pain relief, like That's not how it works, like you never have, my, when I take pain relief, I, my pain maybe goes from like a nine to an eight, like it's never that much, and I think people think that you have periods of time when you feel okay, and that's why you go and do something, and then periods of time when you're ill, like that's, for some people that is how it works, but for people like me I never feel okay.

Amani:

You know, I was saying to someone the other day, like, I am never okay.

Amani:

Like, and that's horrible.

Amani:

It's really hard.

Amani:

Like, and I think what one of the biggest misconceptions about people with chronic illness is when we're being open about it and we're talking about it is that we're being negative.

Amani:

And that's one of my biggest peeves about people misunderstanding chronic illness is that we are some of the most positive people that you will ever meet because to have to wake up every day and face what we face and still.

Amani:

remain, like, basically alive and on the planet, like, you know, and also able to keep up some friendships or relationships.

Amani:

And obviously not everyone can do that when they have chronic illness, but, you know, I'm very proud of myself that I, that's very important to me.

Amani:

So I put a lot of energy into my relationships when I can, but, you know, I'm sort of waffling, but basically I just struggle when people misunderstand us as being like negative when we're being honest about it.

Amani:

And because we're never all right, like we're never, we never have reprieve from our symptoms.

Amani:

So it's a very hard life to live, but, and it's just, I wish people would understand that when we talk about it, we're just trying to, when someone says, how are you?

Amani:

And if they actually want to know, my answer is always intense.

Amani:

Like it's always hard, but that's not because I'm negative.

Amani:

It's because I'm just trying to be honest about my experience, if that makes sense.

Amani:

Yeah, a hundred percent.

Nicole:

Like, I think people also just like, don't comprehend like the grief, right?

Nicole:

Of like, like, I think, I think it was interesting about your past in terms of like, the outdoor education work and stuff, because it's like, I think there's so much prejudice around people with chronic illness that they're kind of..

Nicole:

Choosing it or like that they're in a pattern and that's their thing or something or it's become part of their identity.

Nicole:

I remember having a massive argument with this teacher at a herb school who was kind of saying that like it was problematic when people developed an identity relating to their illness like oh I'm a limey like I've got lime disease and I just kicked off and was like people need social support and validation when they're chronically sick.

Nicole:

And I really don't think people are choosing anything.

Nicole:

Like I think it's something that people are surviving with and developing mechanisms to cope with.

Nicole:

But yeah, I know I've got loads of other questions about all sorts of things, but just before we move on to that, I just wondered if you could share a little bit about that kind of like daily experience of grief like around your own body and yeah, how you're feeling.

Amani:

Yeah, I mean, like just to say, just to respond to what you're just saying, I'll talk about grief in a minute, but like you know, something I really struggle with is when people are like, don't let your illness stop you.

Amani:

Don't let your illness become who you are.

Amani:

And it's like, it is part of me.

Amani:

Like, I'm not letting it stop me.

Amani:

Like, it's not a choice and it's just everything you said, like is so spot on.

Amani:

And I think people, often you find it, people in the kind of positive thinking world or the holistic health world, like not obviously hashtag not everybody, but like You know, you get a lot of people who completely misunderstand that and I think until you've lived in the shoes of someone with lots of chronic illnesses, you can't have an opinion about that kind of thing in my, in my opinion.

Amani:

But in terms of answer about grief, yeah, so I sort of refer to it as like a living grief.

Amani:

So like like, it's very, yeah, it's very hard to describe because, again, until you sort of lived.

Amani:

It, you can't explain, it's hard to explain about how, just how painful it is to watch your friends, your peers, you know, live their life and have these kind of, you know, like I said, everyone has challenges, but their challenges, I'd give anything to have their challenges, you know, like and the grief of that watching people just as an example, I had a hysterectomy and a nephrectomy, so I had my ovaries fallopian tubes, cervix and uterus removed in 2021.

Amani:

And I don't think, even if I hadn't have had a hysterectomy, I don't think I would probably, you know, I doubt I would have been well enough to have kids anyway.

Amani:

I wouldn't want to have kids in this ill state.

Amani:

But you know, that grief as an example, you know, that, That's absolutely huge.

Amani:

Every single day watching most of my friends create families, the family that I've always wanted.

Amani:

And then, you know, that's, so that's like one part of the grief.

Amani:

And then there's also the grief of just like this sort of loss of the life that you Thought you were going to live and still want to live and like, I'm, I'm kind of naturally like a hopeful person and something that's very hard with this sort of chronic illness.

Amani:

The reality of chronic illness when you have like degenerative and sort of long term conditions that aren't ever going to go away.

Amani:

And that's not me being negative.

Amani:

That's just the reality of them.

Amani:

Of course, they ebb and flow and they might improve a little bit, but they're always going to be there for my life.

Amani:

And the chances are they are going to get worse, you know, that is such a head fuck.

Amani:

And when you're naturally sort of like a hopeful person to then have to actually face the reality of that and grieve, grieve sort of ever getting better, because people have this thing, people can't fathom that a young person can get sick and isn't going to get better.

Amani:

And like, I can't really even fathom that.

Amani:

And that's me like, and I think with the grief, like there's something that helps me.

Amani:

A lot is like just being so kind and gentle with myself and it's very hard and I, but I've learned a lot, especially since my hysterectomy, I've sort of learned that a lot more within the grief to sort of be gentle with myself.

Amani:

And if you feel all the sort of sticky emotions like resentment and jealousy and anger and you're like, no shit, you feel like that, like, and let yourself feel it.

Amani:

And I think that I used to fight it and I used to try and pretend that I wasn't grieving.

Amani:

And I used to try and pretend that I was.

Amani:

Like, this is my life, you know, I sort of would try and put like a, a fakely positive spin on it and be like, I think I used to see it as a phase, and now it's been like, nearly 15 years, I'm like, oh shit, it's not a phase anymore, and I need to face the grief, like, a bit more, and I think when you live with chronic illness, like, quite severely, like, as in, You know, when you spend most of your life in bed, you live much more, it sounds weird, but like you live much more in the moment than most people.

Amani:

And I know everyone says that's a good thing, like live in the moment, but actually it can be at your detriment because, but it's kind of out of absolute necessity.

Amani:

So I don't think about the future because if I did, I would jump off a cliff.

Amani:

Like, I...

Amani:

you know, I think, and I know other people with like severe chronic illness of degenerative conditions say the same, like you live so much in the moment and that's all you can do to survive because you're in pure survival state.

Amani:

So speaking of, you know, like that fight or flight, like you're in the trauma that comes with chronic illness, like you're, in such a survival state just coping with severe pain or symptoms every single day that you don't have room to sort of feel the emotions of like the future and stuff so all you can do is be with the grief that's in this moment and deal with this moment and I think to go back to the grief like something I, I feel like my...

Amani:

peers who don't have chronic illness just like don't, you know, not a criticism at all, but like they don't understand the grief and how massive that is and like how incredible it is that those of us with chronic illness keep going because actually that grief is so painful and just like horrendous to feel because, and you rarely can really talk about it other than with obviously people with.

Amani:

chronic illness themselves, but you know, like therapy and stuff, like, you know, I've spent a fortune educating therapists about chronic illness, like, it's very hard to find support with that grief, I think, other than just within the community.

Amani:

Sorry, that was a long answer.

Amani:

No,

Nicole:

it was, it was a really beautiful answer.

Nicole:

And I'm like, proper like tearing up.

Nicole:

Yeah, I think, I think people Yeah, just have no comprehension of like that physical journey in terms of like pain and stuff and then just like the, not that it's a separate thing, like I don't believe in sort of quote unquote mental health, like I think it's all connected, but that kind of emotional impact of of like all of the things you've shared of, yeah, how it feels like day to day.

Nicole:

Yeah, it's really, it's really full on.

Nicole:

And I guess that does lead to the sort of the big question of the interview of like, how, how do you think chronic illness is like connected to trauma?

Nicole:

Like in general?

Amani:

Yeah, so I guess like yeah, sorry, I'm just thinking.

Amani:

So My belief, like, okay, so I've got a lot of things to say about this, so my brain's firing in every direction.

Amani:

So firstly, I just feel like I need, for anybody listening that has chronic illness, that have been told it's in your head, like, that is not what I'm saying.

Amani:

And I think I always want to give that disclaimer because there's a lot, when you struggle, when you've...

Amani:

Had chronic illness for a long time and particularly like undiagnosed chronic illness, like when you're looking for a diagnosis and trying to find a diagnosis and trying to get help and support.

Amani:

Sadly, heartbreakingly, and it makes me very angry, like we will come across a lot of people, whether it's regular people or medical professionals that will say, Something along the lines of, it's just anxiety.

Amani:

It's in your head, like, oh, you've got trauma, like, oh, it's, that's what it is, you know, to completely dismiss the, I don't want to separate, like, mental and physical, but the physical condition that you're trying to get support with.

Amani:

So, I just, like, really want to acknowledge that.

Amani:

So that's not, so I, I'm always hesitant to sort of almost have this conversation because I never want to sound like that's what I'm saying.

Amani:

But my belief with it is that, say, take, take me for example, like, I grew up with severe childhood trauma, like, Proper hardcore, like from three years old, well, probably earlier, but from when I remember three years old, all the way until I cut contact with my mom and dad, like when I was 24, so that I didn't struggle fully, fully bed bound struggle with my health until I was 20, you know, 23, obviously, when you look back, you're like, Oh, actually that started a lot earlier and.

Amani:

I just thought it was normal and I was just trying to cope with what was going on at home and I didn't get any, didn't tell anyone and all those things.

Amani:

So it actually started early in that, but you know, I wasn't crippled with it until I was.

Amani:

22, 23.

Amani:

So that's a long time.

Amani:

That's like, well, my whole lifetime of being in a really acute fight or flight traumatized state.

Amani:

And that's so stressful on the body.

Amani:

So like that severely stressed out state that I was in, no shit I got ill.

Amani:

Like, and that's not me.

Amani:

Making like excuses or make it up or like any of the things that some people like to say, like, that's just a physiological sort of response to know, like, you can't be in that level of stress and your body not sort of almost give out is the wrong phrase, but you know, like collapse, like, and I also have, you know, I, I think I, so I have a lot of like genetic sort of, I don't know what the words are, but like, lots of illnesses in my family, basically.

Amani:

Like, in terms of emotional and physical, like, all of it, like, a lot of history of health problems.

Amani:

And so I think that, you know, my susceptibility was higher anyway, even if I hadn't have gone through a lot of trauma.

Amani:

But put those two together, I just, it's not a surprise that I struggle in the way that I do.

Amani:

But then the unfortunate thing is that, you know the trauma being so severe, it's not like I can sort of, for example, cut contact with my family and then the trauma just goes away because I'm out of the situation.

Amani:

The irony with PTSD, like post traumatic stress, particularly like complex post traumatic stress, like I hate that title but you know what I mean, like long term developmental trauma is that once you're out of the situation as much as you can be that's when the...

Amani:

That's when you're actually almost in a more of a traumatized state because you're in quotations like safe to feel all the symptoms and have all the symptoms there and, you know, it's not, I, when I was younger and dealing with all the trauma, my body was in and that fight flight stay in survival, but I didn't have like PTSD.

Amani:

I wouldn't have been diagnosed at all.

Amani:

And I wasn't diagnosed until I was 23.

Amani:

And I was stepping back from it all, and started to have my own breakdown and crash.

Amani:

So, I'm not entirely sure if I'm making sense, but I, I feel like people misunderstand, well, just again, my situation, for example, like, the, because I'm stepped back from my family, that means that I'm okay now.

Amani:

And it's like, I've dealt, ever since I was 24 and I cut contact, like, My symptoms of trauma in my body and my mind have been gnarly as fuck and have only just begun to sort of Settle slightly because I've been doing long term EMDR work on the NHS, which is amazing and I'm so grateful for that but though that 15 years or however long that is, I can't do maths, like is Like, it doesn't surprise me that my conditions have got worse during that time, and I've collected other health conditions because even though I'm not in the trauma situation itself anymore, like, my body is still processing the trauma, like, my body is still traumatized as shit, and it's still...

Amani:

you know, it's, it was a lifetime of trauma, like up to 24 years old, like, it's going to take a long time and take a while to sort of release that and settle that.

Amani:

And I kind of believe, not in a negative way, but I believe it's sort of a lifetime's work.

Amani:

Like, I don't think that you can have that much trauma and then just suddenly be all right.

Amani:

Like and I think it doesn't surprise me that over this, since starting to try and more and more set because.

Amani:

The trauma in my body is still flying around in my body and, you know, it, yeah, I think I'm going to stop waffling on, but like does that make any sense?

Nicole:

Yeah, no, it makes like a thousand percent sense.

Nicole:

And like, I think, yeah, like in my herbalism, PTSD and traumatic stress course, like there's like a whole module about like how trauma shapes the body and there's like, you know, these kind of, acute responses of someone being in like for example fight or flight as a reaction to something and then there's the like what happens if that kind of physiological reaction which is meant to be a very short term life saving mechanism like in nature becomes like a chronic thing that's you know and it does lead to like system collapse right like to kind of degeneration in the body of You know, like, I think that's partly why I couldn't recover from my costochondritis with my ribs is because you need the adrenals and endocrine system to be functioning to repair cartilage, and if you don't know what this sort of parasympathetic system, like nervous system state is where you can actually You know, find out what rest feels like then, you know, you're just not gonna get anywhere and yeah, it wasn't until lots of kind of Support and self education and stuff to kind of understand what that what that feeling meant but yeah, I think and I really loved the fact that you gave like a disclaimer at the beginning, because I think, you know, like we do live in this like hideous capitalist society where all sorts of things are in our environments, like switch on certain chronic illnesses, right?

Nicole:

Like cause chronic inflammation, whether it's smoking or, you know, something genetic or it's pollution, like there's all these factors.

Nicole:

And I think it's often just this like, cocktail mix of different things going on.

Nicole:

And I think trauma and that kind of nervous system response is like a major, major, major formative thing.

Nicole:

But like, you're right, like it's not the only thing, right.

Nicole:

And yeah, one, you know, things always kind of like cascade.

Nicole:

But in terms of like, like, obviously there's like how trauma Contributes to like long term chronic illness and then there's this other part of like what is traumatizing about being chronically ill and Interacting with the medical system and I know you know We've been like close friends long term and it's it's been really hard to see you sort of in and out of hospital like over the years And I just yeah, I just wondered if you can share like a little bit about what sort of medical trauma is like specifically.

Nicole:

And yeah, maybe this does connect to the next question, but like, you know, I've said about friends, like seeing you kind of go in and out of hospital and that's become very like normalized, right?

Nicole:

Of like, okay, Amani's in hospital, but for you, it's like each time is like more difficult and more triggering because of previous hospitalizations, but everyone around you is kind of like, you know, like it's like Amani's in hospital.

Nicole:

Do you know what I mean?

Nicole:

Like, anyway, we've talked about this before, but I just wondered, yeah, if you could speak to that too about, yeah, just like how it, how it kind of feels like being in that system and some of the harm from, you know, gaslighting from doctors or other experiences in hospital.

Nicole:

I know you've had a lot of challenges people have all this prejudice around like pain relief and I've had to call the hospital and like fight really hard to get you more pain relief and stuff because of like people's like horrific attitudes and stuff.

Nicole:

Anyway, I'm rambling now, but I just, yeah, I just wondered if you could share a little bit about like medical trauma in general.

Amani:

Yeah.

Amani:

I mean, I was nodding along the whole time you're talking then like, and obviously, you know, like.

Amani:

My story.

Amani:

So just to like, before I talk about medical trauma, like just to give a sort of vague history of my experience with hospitals, like, well, it sort of all started when I was younger, my mum had very acute medical conditions, and then also was in psychiatric hospital a lot.

Amani:

So I grew up being her advocate.

Amani:

So that's relevant because I already had like, post traumatic stress from My mum, looking after my mum and navigating that sort of, you know, every month or two, like, she was in and out, in and out, and I'd be there, like, navigating all the time, so I learned that, so I had that, and then I first, you know, the main time I started going to hospital was basically from sort of 2016,

Amani:

It all started with a three week stay in 2016, and then I was going in every month for at least like eight or nine days.

Amani:

And then this is, so this period of time right now is the longest time I haven't been in hospital.

Amani:

So I haven't been in hospital since February this year, and that's the longest time since.

Amani:

That's the summer of 2016 and I, you know, September, that's February, like that's not that long.

Amani:

So I, through, through the pandemic, I was going in every month, like I've just for not for always the same condition, like, but for lots of different things, but yeah, so I've been in hospital as an inpatient a lot.

Amani:

And like you said, you know, like.

Amani:

When I, when I first was going in, I, it was so interesting to me when I first went in for that three week stay in 2016.

Amani:

I had like one or two visitors every day for three weeks, which is incredible.

Amani:

Like, I didn't even realize I knew that many people, like, it was amazing.

Amani:

And then I was in every month.

Amani:

I think I had a few, you know, after about six months, I just remember like on the fifth or sixth day.

Amani:

I was like, I probably had, you know, I was in for like, say eight or nine days.

Amani:

Like I probably had one or two visitors and obviously that's better than nothing.

Amani:

But I remember like really noticing like I'm now a lot more used, I wouldn't say used to that cause it's horrible and really painful, but I'm, I kind of expect that because that's what happens every single time.

Amani:

I'm in and out, in and out.

Amani:

But when it first happened, I was just like, what is going on?

Amani:

Like, where is everybody?

Amani:

Like, because what happens is like, when you first go in, it's a crisis.

Amani:

So everyone's like, I'm there, like, oh my God, you know, like, I'm going to help.

Amani:

Like, what can I do?

Amani:

Like, I'm going to come and visit you because this isn't normal for you, you know?

Amani:

And I think that's the misconception is people sort of, then when you keep going in and out, in and out, people just think you've got used to it.

Amani:

And see it as your normal.

Amani:

And just because I'm, it's my normal in quotes, that doesn't mean it's okay, that doesn't mean I can cope with it.

Amani:

And, the biggest, oh my god, it drives me nuts, like the biggest misconception and misunderstanding is that the more you go to hospital, the harder it is.

Amani:

So I have friends who have been to hospital for, whether it's like a kidney infection or something acute and they're like, oh my god, like obviously it was hard, but like Oh, the staff were amazing.

Amani:

They were so nice and almost kind of gaslighting me because they know how much I bang on about how terrible I get treated in hospital.

Amani:

I'm not saying every single member of staff that you get the odd one that's amazing, but nine times out of ten, I get really, really mistreated and it's...

Amani:

traumatic as fuck, and I'll talk about that in a minute, but people, when you have acute illness, you're treated literally like you couldn't be treated more differently in hospital.

Amani:

And of course you get these stories of dismissal and neglect all the time, like with acute illnesses, but you don't get the head fuckery as much as when you go in with chronic illness, you know your body, you know what you need, you know what's going on, and they just cannot handle that.

Amani:

And I'm never an arsehole, well, I sometimes can be an arsehole arsehole, but like, you know, most of the time I'm actually very polite with it, like I, because I know how to work them, I have, you have to stroke their ego, the medical professionals, like, you have to stroke their ego, you have to be so polite, you have to...

Amani:

Oh, it's a complete art and I've got it down.

Amani:

But even though I've got it down, like it doesn't mean I'm going to be treated well and that they can cope with me knowing what I need and knowing what's going on and knowing what I don't need and all this stuff.

Amani:

And I think that their egos, like I'm talking generally, like obviously, like I said, not everybody, but nine times out of 10, like a doctor or nurse's ego, like can't cope because of the system they're working in and they trained in.

Amani:

They cannot cope with a patient knowing what they need because they take it personally.

Amani:

As though I'm saying they don't know what, what to do, and that's never what I'm saying, you know, it's like, oh, it's exhausting.

Amani:

And you get the occasional doctor or nurse that's like, oh my god, this is great, you know, you know, you're doing my job for me, that's amazing, and that's just such a breath of fresh air, but it's, it's actually very rare that that happens.

Amani:

And so, my...

Amani:

Like, with medical trauma, like, you have the obvious trauma that is the physical invasiveness of being in hospital.

Amani:

You have no personal space.

Amani:

You, even if you have a room on your own, which I normally do because of my immune system you don't have, I know it sounds silly, but people just barge into your room at any point.

Amani:

And for me, I think I've now learned that that's partly with my...

Amani:

The autism stuff and my trauma history, but also there's something about that you just, you've got no agency and I think that's a very, you know, shit example, but when everyone just barges in, like you, you've got no sense of agency or space or respect or you know, it's just the little things like if someone knocks on the door and then walks in, you're like, oh, they actually respect me, you know, and then you, so you've got that and then you've got the invasive tests and you've got the you know, like, The whole world has seen my vagina thousands time over thousands of times.

Amani:

Like, it's just like ridiculous.

Amani:

Like my, I have to have a catheter like every time I'm in hospital and I, or I have to be catheterized or whatever, like, so that's a problem I've had since 2000.

Amani:

15, 16, I've had a lot of indwelling catheters, so everybody's up in my vag all the time, like, with medical students just stood around me, like, initially it was always, like, in acute moments, so I would just take it and I'd just be like, whatever, but I have, like, sexual, like, assault PTSD as well, and so obviously that's, like, very triggering.

Amani:

Now I do it myself, so I put in an indwelling catheter in myself because I'm just, like, I'm doing like, fuck off.

Amani:

They don't like that, but I refuse to let them do it.

Amani:

And I, if I can, I do it myself, obviously not always.

Amani:

But so you have the, you know, I've had such horrendous like physical medical trauma, like whether it's nearly dying, like I've nearly died of sepsis twice in two years in 2020, 2020 and 2021.

Amani:

And that's obviously you know that for me that's kind of nothing like that's what I'm used to but obviously like it's not nothing it was severely traumatic I was like two hours away from dying the first time like in recess like being you know they were like amazed I was okay and in well I wasn't but like as in I survived and you know I've nearly had proper kidney failure like six times in a year and a half like you know all those kind of things and like just the little things of like, well, they're not little, but you know, the constant daily things of, for example, it doesn't sound like anything, but having your blood taken for someone like me is incredibly traumatic because I've got, I've got veins, what they've said, I've got veins worse than a cancer patient that's been on chemo for years because of, everyone always thinks I've like, you know, not that it should matter, but I get called, I get called out as like a, you know, I've done IV drugs a lot and stuff like that and that shouldn't matter like even if I had I shouldn't get judgment but people as soon as they see my veins are so bad they don't believe I've been in hospital that much so they're just like oh right yes she must have like used a lot so and then they just treat me like shit which is first that's fucked up for its own reason like it shouldn't matter my history but also I haven't and it's just like the misunderstanding that having really shit veins it sounds stupid but like The trauma of like, when I go for my blood, which I have to do every two to four weeks, it takes so many attempts, and now they have to take it, if anyone's squeamish, don't listen, but they have to take it from the thumb knuckle, or my feet, like, and when I have a cannula, like, it's always in my foot, and like, it's just all those things, if it was one time, it would be horrible, but I deal with it, but it's, it's a cumulative trauma, so it's like, constant, it's over and over and over again, and the, The head fuck with medical trauma, which I think people don't understand, the sort of psychological impact of it is that you need it, so normally with trauma, it's like, you don't need it, if that makes sense, that sounds very weird, but like, it's a horrible event that happens, but with medical trauma, it's a horrible event that happens, but you need it, so you have no choice but to put yourself through it, because either you're going to die if you don't, or you're going to be even more sick, or you're What or they're going to treat you like you don't want to get better, you know, all the, all of those things.

Amani:

And I think that, you know, that's a huge part of medical trauma.

Amani:

And I have a lot of that, but I have to keep going.

Amani:

I have to keep going back to hospital.

Amani:

I have to keep going back for my bloods.

Amani:

Like I have to, you know, I inject myself like every week with this low dose chemo for arthritis.

Amani:

And I mean, that's not a big deal for me, but to somebody else, like it would be, but.

Amani:

You know, you just have to keep doing it, you have to, and that's a big head fuck.

Amani:

So you have that side of medical trauma, but then you also have the emotional side of medical trauma, which does not get talked about enough at all, and gets completely overlooked, which actually, for me and this is saying something considering how much physical medical trauma I've had.

Amani:

Like going to hospital all the time and dealing with the medical professionals and the gaslighting dismissal and neglect that I've received, that is much more traumatic than the medical than the physical medical trauma.

Amani:

And that really is saying something because of how much medical, physical trauma I've had.

Amani:

So the, I have medical PTSD, which I would say most people with like long term severe chronic illness with going into hospital, a lot of people, you know, they, They have it too.

Amani:

It's a very common thing within the chronic illness world, unfortunately.

Amani:

But I would put money on it that people would agree with me that it's the mental side of things that is more likely to give you that PTSD than Well, obviously it's both the physical and mental treatment, but that's what I feel anyway, from my experiences.

Amani:

It's the emotional side of things that is more of a headfuck and traumatic.

Amani:

So, you know, for me, I had, I, when I first started to go to hospital, I actually thought they might help me, which sounds very naive now, but I was like, I had this experience, you know, I had a lot of experience of being dismissed with doctors, but I thought surely if you're like in the hospital and they're admitting that you need enough help to be in hospital, that they would want to help.

Amani:

I couldn't have been further from the truth.

Amani:

It's not that all doctors are assholes.

Amani:

It's just that they don't want to listen.

Amani:

They don't have time.

Amani:

Like they are stressed out of their mind.

Amani:

And they.

Amani:

Just don't want to hear your experience, basically, because it doesn't fit with their textbook, and they don't have the capacity to sort of listen, is from my experience.

Amani:

So, I've got so many stories, I don't even know where to start with the medical gaslighting, dismissal and neglect, but as an example, I have a long term condition with from a back injury when I was co steering.

Amani:

So I was like jumping off really high cliffs into the sea and I compressed the vertebrae in my back, two vertebrae in my back from a very high jump.

Amani:

And then later the next year I prolapsed to the two discs.

Amani:

I then had symptoms of a condition called Cauda equina, which is a very serious condition.

Amani:

And if you have the symptoms, which for me were numbness around the saddle area, like around my buttocks and, and I was losing control of my bladder.

Amani:

And if you have those, you have to go straight to A& E.

Amani:

Like everybody knows it, like in you know, the medical world, like that's what you have to do.

Amani:

So I went to A& E five times.

Amani:

And each time I was told it was anxiety and attention seeking that I was going.

Amani:

I couldn't feel my butt, like, I was wetting myself, I was 24 or 25.

Amani:

And I, like, every single time was just told it was anxiety and attention seeking, so I gave up.

Amani:

So I went home, two years later.

Amani:

I, well, over that time I started to, like, not be able to pee properly.

Amani:

I stopped losing control of my bladder, but it went the other way.

Amani:

So I started to struggle with peeing.

Amani:

Didn't think anything of it.

Amani:

And then, fast forward a couple of years, I stopped being able to pee completely.

Amani:

And that's when the catheter journey started.

Amani:

So I now catheterize every time I pee.

Amani:

I have indwelling catheters a lot.

Amani:

I'm waiting for a catheter through my, just below my belly button, permanently.

Amani:

All this could have been avoided if they'd operated when...

Amani:

I went to A& E those five times I was later, you know, a few years later, I was diagnosed with neurogenic bladder and bowel, which is when quadroquina is not picked up and not operated on.

Amani:

That's what you're left with.

Amani:

So people with spinal injuries and stuff like that will have...

Amani:

if they're not able to be treated, like it's neurogenic bladder and bowel.

Amani:

So I've been told I'm going to have kidney failure at some point.

Amani:

I'm going to have this, probably a urostomy, which is a bladder removal at some point.

Amani:

I will have a colostomy bag at some point.

Amani:

This all could have been avoided if they listened to me.

Amani:

And that's obviously quite an extreme example of like the neglect and dismissal.

Amani:

So those things happen when you're actually full on neglected quite severely.

Amani:

But then you have the times when, for example, the second time I had sepsis, I knew what was going on.

Amani:

I was in an ambulance.

Amani:

I was also bleeding because I was in chemical menopause, which confused everybody and threw them off.

Amani:

So every single person I came up against for two days, were like, oh it's just endometriosis, it's just endometriosis, they weren't even taking my bloods.

Amani:

And finally, on the gynae ward, they eventually took my bloods and were like, oh shit it's sepsis.

Amani:

Everybody, like the paramedic, the nurses, the doctors, weren't even giving me pain relief because they were just saying I was an opiate seeker, I was just being dramatic because it was just endometriosis, like this was literally their words.

Amani:

Like, I have had that told to me endlessly that it's just endometriosis.

Amani:

endometriosis, or it's just your pain, or you just have to get used to it, or stop being dramatic, or essentially saying you're a woman, get over it.

Amani:

Obviously they don't say that outright, but they may as well be.

Amani:

I'm going to wrap this up now because I could talk about it forever, but I think that what needs to be understood is that The constant, like every day, if at least like, you know, every day, every week of my life, like I'm battling the medical system, the gaslighting, the dismissal, the neglect, it just royally fucks with you.

Amani:

And it makes you feel so insignificant.

Amani:

So like you don't matter.

Amani:

And when you've had a history of severe childhood trauma.

Amani:

That already told you that?

Amani:

You know, like in terms of through that experience, I really learnt to believe I didn't matter.

Amani:

I wasn't worthy.

Amani:

Like I had no place in the world.

Amani:

Like my needs didn't matter.

Amani:

I then am facing that every time I'm in hospital, every time I talk to a doctor who doesn't believe me.

Amani:

So friends are like, oh, you, you know, how did the appointment go?

Amani:

And I'm like, they've got no idea that that's all behind it when I'm trying to answer that question, like people just think it's just an appointment.

Amani:

When you have chronic illness and you're in hospital a lot, It's never just a hospital stay, it's never just an appointment.

Amani:

It brings up all of this shit, all of the time, and it's just fucking exhausting.

Amani:

And I will stop there.

Amani:

I'm sorry.

Nicole:

No, please don't apologize, like, that, yeah, was so, so, like, fucking moving, and yeah, I love the, like, not all doctors are assholes.

Nicole:

But like, yeah, I know, I know that they can really feel like assholes a lot of the time.

Nicole:

And we're going to kind of get to some questions about like what people can do differently.

Nicole:

And I was going to ask you about that, about like what can sort of health workers do differently.

Nicole:

But before we go into that Yeah, I know it's like a really a lot for you to share in terms of like all this painful, painful stuff.

Nicole:

But I know there was recently this horrific piece in the Daily Mail, which kind of targeted different people with chronic illnesses, like without their consent, like sharing pictures, screenshots of social media.

Nicole:

And it was just, yeah, it was just kind of amplified sort of especially right wing views, but society's views around kind of chronic illness.

Nicole:

And I just, yeah, I just wondered, like, what are your experiences of, like, prejudice with chronic, with chronic illness?

Nicole:

Like, I guess, kind of more broadly, like, you've given lots of examples from friends and things and from healthcare workers, but yeah, is there anything you'd like to share in terms of just, kind of, like, society's worldview on chronic illness?

Amani:

Yeah, so, Yeah, obviously with the Daily Mail article and then obviously that horrendous Candace Owens picked it up to her, like 4 million viewers, oh my god.

Amani:

And I was, yeah, one of the people in the article, and that they talked about and it was all about that we're making up our conditions and illnesses.

Amani:

And taking selfies to get attention on social media, and I think that that's a very big world sort of view, like misunderstanding of, just as an example, like social media.

Amani:

So like for me, social media is like my connection to the world.

Amani:

It's amazing, without it I could not, I don't know how I'd cope.

Amani:

It's a way to find people that are living with similar conditions, young people that aren't getting better either.

Amani:

or are getting worse and are dealing with hospital a lot, have medical PTSD, like all of the things that I struggle with.

Amani:

There are people out there too, but not in my daily life, like I'm in my like sort of in person life.

Amani:

And so social media is incredible for our mental, like, emotional health and all, you know, all of it, like, and I think that there's a big misconception just generally in society that Yeah, that we're making this up, like, that we want this, yeah, it just blows my mind, like, I can hardly even say it out loud, like, that we want this, that we, makes me so angry I could cry, like, that this is a choice, and that this whole, like, ableist narrative of, like, that thing I was saying earlier, like, don't let your illness stop you, you know, like, this woman, or, like, person had these conditions and ran a marathon and didn't let it stop her, as an example, like, that's obviously amazing if someone does that.

Amani:

I can't do that, that's not because I'm...

Amani:

Weaker, or I'm choosing not to, or I'm choosing this.

Amani:

It's got nothing to do, like, people can have the same condition, this is something that gets misunderstood a lot, like, people can have the same two conditions, and have complete, I mean, same conditions, same two people can have the same conditions, and have completely different experiences of it, you know, and I think that people, basically, I sort of refer to myself as like a walking discomfort trigger, and I, because people in our society.

Amani:

We live in such a like quick fix society, very, very, oh my god, ableist society.

Amani:

People just want you to be better.

Amani:

And it's sometimes out of care, but sometimes just like out of ignorance.

Amani:

Like people just want things to be okay, just want to move on, just want to fix things.

Amani:

People can't...

Amani:

Not everybody, obviously, like, some people are amazing at this, but a lot of people can't sit with the discomfort that's triggered in them when someone like myself shares my experience and story.

Amani:

And I think that that's due to our like, fast paced, like, ridiculously, like, the po bullshit, like, toxic positivity, like, just everything.

Amani:

And then obviously also to like, talk about the misogyny and like, fucking sexism in healthcare, and in the whole world.

Amani:

But like, you know, the whole thing of like, women's pain is so much more dismissed than men's, and...

Amani:

And then you've also got like the opiate crisis that's got a lot of press recently, sort of over the last few years, like and I think that from, I've noticed a massive increase over the last eight years of going to hospital a lot.

Amani:

I've noticed over the last sort of three years, a huge increase in people saying I'm an opiate seeker, as in medical professionals saying I'm an opiate seeker when I'm trying to get pain relief, when I desperately need it, when I'm in a lot of pain.

Amani:

And passing, I've literally have been passing out from pain in front of doctors and they've been like, wait, let's just get you, you're an obviously an opiate seeker.

Amani:

Let's just get you to a taxi before you pass out and send you home.

Amani:

Like no joke.

Amani:

Like I've had that multiple times.

Amani:

Like, and I think that's like, there's a massive misconception around opiate use.

Amani:

And of course it has problems.

Amani:

Like, of course, but there's some of us that really need it in order to literally cope with our pain every day.

Amani:

And.

Amani:

I think there's just the ableism within our world means that there isn't space for people like myself to kind of be as honest as I want to be about my experience because people can't cope with it.

Amani:

And I understand, like, no, you know, obviously I understand it's hard to accept that this is a reality of life, but like, death is a reality of life that we have to accept.

Amani:

Like, well, we don't have to, but like, it'd be easier if you did.

Amani:

You know, like, death is a reality.

Amani:

Chronic illness is a reality, like, sexism, racism, ableism, it's all, unfortunately, part of our life.

Amani:

And like, when we actually learn to, like, face it and have these tough conversations, people feel seen in a way that they don't if we don't do that.

Amani:

Does that make any sense?

Amani:

Sorry.

Amani:

Yeah,

Nicole:

no, a hundred, a hundred percent, like, yeah.

Nicole:

And I think...

Nicole:

I think I think you're totally right about people's discomfort with seeing someone else kind of suffer, which I think in some ways is like a very human thing that we want to help people, right?

Nicole:

Like, we respond to things that we see are oppressive or, you know, harmful to people, but at the same time, like, I do think there is something about this, like, surrendering with chronic illness of, like, Some level of acceptance while holding space that, like, you're still, you know, investigating new treatments and trying new medications and advocating for yourself in different ways.

Nicole:

But it's like, yeah, it's that, like, horrible tension of, like, not putting that, like, ableist pressure.

Nicole:

Like, I know when I, when I was sort of sick.

Nicole:

It was really like, I mean, it's also just my personality that I was so driven constantly to try everything, you know, like, Oh, I'm going to go to this guy.

Nicole:

I'm going to go to this guy.

Nicole:

I'm going to borrow money for that appointment.

Nicole:

And, and it was like, actually, I only really recovered when I actually surrendered and was like, I'm just in chronic pain.

Nicole:

Like, I don't know what's going to help.

Nicole:

And it was the slowing down that enabled me to learn all this stuff about parasympathetic and everything that kind of changed my life.

Nicole:

But I think you're right.

Nicole:

Like, I think it is, you know, on the other side of the fence, like it is really painful, like seeing people you really care about just being like really debilitated, right?

Nicole:

But yeah, you're also right that it's just, you know, like, you know, the majority of people have some sort of illness, right?

Nicole:

Like in terms of, if you look at humans, like over their lifetime, like, and kind of aging and different conditions and things.

Nicole:

And it's like, yeah, like in the herbalism and PTSD course, I talk a little bit about like healthism and, you know, you say like, what is health?

Nicole:

And you think about this like skinny white woman running or something, for example.

Nicole:

drinking a green smoothie, like, you don't actually think about health more broadly.

Nicole:

Yeah, like, sorry to, sorry to ramble there as well, but I guess I just wanted to kind of, yeah, honor the fact that we've been talking a long time and it must have taken a lot of energy, like, emotional energy to share all this stuff.

Nicole:

Just kind of, like, moving towards, like, what can people do in terms of, like, what support or solidarity has, like, been meaningful to you.

Nicole:

like over the last 15 years, you know, maybe things that friends have done or organized and also like what, you know, lots of people that listen to this podcast, hopefully are people working in healthcare in different ways.

Nicole:

You know, I know there's a lot of like independent herbalists, but there's also people, you know, who are working in hospitals and different healthcare settings.

Nicole:

And I just wondered, like, what could they do differently, you know, to make you feel, more of a human and more listened to and respected and stuff like during a hospital stay, for example.

Nicole:

Yeah.

Nicole:

And if there's any other kind of like political solidarity or anything that would kind of yeah, that you'd like people to, to do or to think about, if that makes sense.

Nicole:

Sorry, a million questions at

Amani:

once.

Amani:

No, it's okay.

Amani:

Feel free.

Amani:

I will probably forget some of those questions.

Amani:

So like, feel free to ask me again in a minute when I had a ramble.

Amani:

But first of all, like, I think.

Amani:

Just ask, answer your last question, is like, something I, like this is obviously a whole episode in itself, but something I really struggle with is the accessibility within activism, like within activist circles, and I know that I'm not alone, so like the ableism within activism is something that's It's very hard when you're someone like me who is desperate to contribute like politically with activism and everything, you know, like, and obviously I do what I can, but there's actually very little I can do.

Amani:

And I could do a bit more if it was possible, if that makes sense.

Amani:

That's obviously a massive conversation, but I just wanted to acknowledge, you know, whether it's like, yeah, I just wanted to acknowledge that whether it's, you know, like people who are holding an event, say that, like, you know, you can bring a chair or a beanbag or people who are running a project say that, of course, you don't need to come to meetings, you can join through zoom and do some of the admin on your computer in the bed in your bed, you know, like, or have shorter meetings or, I don't know, it's just like, there's, it might sound all obvious and like people do that already but they actually don't and I think, or if they do, it's kind of like too much of an effort for them, that sounds really bad.

Amani:

But from my experience, like, of course, I've experienced, like, people that are really, like, welcoming and want to include me and feel, make me feel sort of, like, able to join in.

Amani:

But there are, unfortunately, there's not enough sort of, like, awareness, I feel, from my experience, and that's just where I can speak from, of sort of the ableism within activism.

Amani:

And I think we've obviously we've all got room for improvement in everything in life, but I think that would be something that I would love to sort of see more conversations of and I'm sure they happen, but like well, I've been part of them, but you know, I just want that a bit more, I think.

Amani:

And in terms of what medical professionals can do to help.

Amani:

Like, when I think of the doctors and nurses that have been the best for me, like, something I come up against a lot is when I'm having a moan about a horrible experience in hospital, people will sometimes respond with like, Oh, but they're so over understaffed and overstretched.

Amani:

And so don't get me wrong.

Amani:

Like, of course I understand that.

Amani:

obviously loads of empathy and compassion for that because I'm in hospital all the time.

Amani:

I see, you know, desperate state the NHS is in, but the people who, the hospital staff, whether it's doctors or nurses or even healthcare assistants and stuff, like the ones that have made me not be traumatized from my stay, they haven't taken any more time with me than someone who's been an arsehole or unhelpful or whatever or, you know, actually re traumatized me.

Amani:

So if that makes sense, like they.

Amani:

It's not that I'm asking for more time or more energy from them when they're already overwhelmed and understaffed, like the difference is, is sort of remembering that you're not just, remembering that the patient isn't just a piece of meat, that you're, like, we are a human, and I know that might sound really obvious, but it's not when you're I understand why it happens, like, within hospital, you know, you're so busy, you're just like, bam, bam, bam, having to get through all the patients, but the difference with doctors and nurses who, who I don't feel traumatized by, and I feel cared, like, actually genuinely cared for, is when they...

Amani:

Listen to me and like have, have, I think it's respect actually, like have genuine, like respect for my experience and have like the ability to be, I guess, humble, like, and know that perhaps they don't know the answer, like the best thing.

Amani:

I know that sounds weird, but the best thing a doctor or nurse can do is say, actually, do you know what?

Amani:

I don't know.

Amani:

Like they, there's this misconception that we want doctors to know everything and I feel sorry for doctors to have that pressure that I think, I think some people do want the doctors to know everything, to have all the answers, but just the reality of life is they don't, nobody does.

Amani:

So to have a doctor say, I don't know, I'm going to get back to you, or I don't know, what do you think is going on, for example.

Amani:

is like so huge.

Amani:

It makes me trust them.

Amani:

It makes me feel safer.

Amani:

Like it makes me feel respected and listened to.

Amani:

So that's just like one thing that people in the medical world can do.

Amani:

And I think another thing that I, in terms of sort of like more, like holistic practitioners and stuff like that, and like herbalists and people in that kind of field, something that I've struggled a lot with, like, I don't see anybody anymore, sadly, like I want to start again, but I got quite, like you described, Like I got very burnt out when I was sick for the first probably like seven years, eight years.

Amani:

I was hardcore with the diets, with the supplements, with the tinctures, with the appointments, with the bodywork, like all of the things I tried and I got completely burnt out like you described and I've had to have a break from all of that.

Amani:

But I think something that I do struggle with within, whether it's herbalism or naturopathy or whatever, like whatever it is that isn't sort of like western medicine, like.

Amani:

I struggle with, like, there's a lot of people that have declined working with me because I'm too complex.

Amani:

Obviously, I want them to say no if they feel overwhelmed by my situation, but there's a way of doing it.

Amani:

You get burnt out trying to find practitioners, so if someone feels like they can't work with you, I think my, I just wanted to say, like, to, if you feel too overwhelmed by someone's story in their medical situation, it's just the way you can deal with that rejection.

Amani:

of that person is so key to their journey.

Amani:

Like, I've just had such awful experiences of people either trying to help me, then being, realising they're in over their head, and then just treating it so badly.

Amani:

So like, we all need to set boundaries, and like, I don't want someone to treat me if they feel like it's too much, because that's not helping anybody.

Amani:

Like, I want them to say no, but it's the way you say no.

Amani:

And it's also sorry, I'm saying a lot of things, but like, something else that's really helpful is to drop the judgment about people taking medications.

Amani:

Like, it's just, I have no time for it, like, I'm, I just get livid with the judgment of like, people that, it's not about choosing to go down the medicine route, like, medication route, like, I don't have a choice.

Amani:

Like, well, of course, I mean, I could not, but I would be even worse off.

Amani:

Like, so I have had a lot of judgment when I've been trying to find practitioners to support me with, like, other things, other aspects of my health.

Amani:

Like, they, I feel like there needs to be more understanding that you can have both.

Amani:

You can be taking tinctures and also taking medicine, medications, you know, like, provided, provided they're all safe to be taken together.

Amani:

Like, I just think the judgment around taking medications is just, there's no place for it.

Amani:

It's not fair.

Amani:

People don't take time to understand why somebody might be taking a medication that's actually helping them.

Amani:

Sure, there are lots of side effects and stuff, but anyway, I'm not going to ramble about that.

Amani:

But I just feel like I really wanted to say that because I get a lot of judgment from people and it.

Amani:

puts you off trying to find other help.

Amani:

And I think your other question was about like what friends can do.

Amani:

Obviously that was a very short winded like description of what medical professionals can do.

Amani:

I feel like we could do a whole podcast on that subject itself, but I hope that was like a bit helpful.

Amani:

But yeah, with like friends and sort of people in my community.

Amani:

I think one of the biggest misconceptions is that like, I need more help then.

Amani:

They can give, what happens basically is that, sometimes, not obviously all the time at all, but like sometimes what happens is, say I've been in hospital, I've been especially unwell, I've had an operation or whatever, like people will think that I'm wanting a lot more help than they can give.

Amani:

And so they don't show up at all, and then everybody feels upset, you know, like, they feel shit about themselves, I feel sad and let down and hurt, and like, a bit abandoned, like, and confused.

Amani:

And I've now learnt this is a pattern, and don't get me wrong, like, I completely understand what happens in this sort of like, Misunderstanding, but now I'm very, I try and sort of reassure friends that literally if someone can just pop, like, of course sometimes I need, like, help cleaning my kitchen is amazing if someone can do that, or bringing me food, that's amazing too, but if people can't do that, which a lot of people can't, they're overwhelmed with kids, or work, or both, or their own health, or whatever, like they're overwhelmed.

Amani:

I think that's Literally a text message means the world to me, like I'm very easily pleased, like I'm a cheap date, like a text message, like a phone call, a voice note, like coming round for tea in my bed, or visiting like me in hospital, or even if you can't visit me in hospital, like send me a message, like just let me know that you're thinking of me.

Amani:

All those things, I think people don't realise how excruciatingly lonely chronic illness is, like, you know.

Amani:

Most other people are out at work seeing people, like, engaging with people or their family or whatever, like, of course, I see, you know, a good amount of people in my life because I've got amazing friends, but it's still incredibly lonely because 90 percent of my life is spent on my own.

Amani:

And when you go to hospital, it's sort of 10 times that.

Amani:

And time is just, when you're chronically ill, like in bed a lot, time is just totally different to me than it is to someone who doesn't have chronic illness.

Amani:

The days are so long, the weeks are so long, like, and so to break that up with just a cup of tea, or just someone checking in with a text, like, it means the world, and I think that people who don't have chronic illness, like, put a lot of pressure on ourselves due to our fucking society, like, there's not enough community support in our society, first of all, so then individuals feel that it's down to them to, like, support me in these big ways, and I need, like, a lot and stuff, and don't get me wrong, like, I do need a lot of support that I don't have, and that is a problem, but that's not, like, my friend's responsibility, obviously, like, and I try, so I've since learned through a lot of, like, trial and error to offer, like, as much reassurance as possible that I don't need my friends to fix my situation.

Amani:

I just want connection.

Amani:

Literally, I don't mind if I live in a fucking tip, if it means that I have a text message or a phone call or a cup of tea with someone.

Amani:

Like, obviously, I have the amazing friends that I do that sometimes do come and clean up for me or, like, bring me food, and that's incredible.

Amani:

That's...

Amani:

That's like a complete bonus, like the most important thing for me, everybody's different, but for me, it's like it's connection and to not feel forgotten about and I think to go back to what we were speaking about at the beginning about the grief, something you feel a lot when you have chronic illness, sort of almost no matter how much connection you have, you feel forgotten about.

Amani:

I think it's a chronic symptom of chronic illness, like, because everybody's out there living their lives.

Amani:

And that's how, this is how it feels.

Amani:

I mean, you know, everybody's out there living their lives and you feel forgotten about and you feel behind everybody because you kind of, I don't know, maybe it's harsh to say you kind of are, but like, I kind of am, you know, like in a, from society's view, like viewpoint, I am like, that is my situation and I challenge that.

Amani:

Like, I don't believe our worth is in what we do and what we, how productive we are and all that bullshit.

Amani:

But we do have to also see that we live in the society that says that is our worth and that is our value.

Amani:

And so I think that, yeah, the, the most important thing.

Amani:

that friends can do to support someone with chronic illness is communicate and connect.

Amani:

And I think the best thing that people, the other best thing that people can do is that to ask someone what they need.

Amani:

So like, and to be really clear with your, your limit, you know, like I'm not, I don't want friends.

Amani:

I've had friends that have helped me.

Amani:

to their detriment and got burnt out and then just disappeared from my life.

Amani:

And that's not what I want at all.

Amani:

Like, I really love it when people say no, because it means I can trust them more.

Amani:

And like, it means that I know that if they're helping, they really want to help.

Amani:

And they have, like, checked in with themselves, and they're not going to get burnt out and resentful, because that just doesn't help anybody.

Amani:

So I'll stop there because that was a long winded answer, but I don't know if that was helpful.

Nicole:

Yeah, no, that was amazing.

Nicole:

And I think, I think I wanted to add that, like, often I think when you're experiencing chronic illness, like, the world makes you feel like you're a burden, right?

Nicole:

So you feel like you're extractive or something on other people's time and energy because you need care and support, you know, like, I need my stepdad to drive me to hospital or...

Nicole:

You know, there was a point where I like couldn't even lift up a plate, like, cause I was in so much pain and like, I'd need help with cooking.

Nicole:

And it's like, you kind of get used to like being defaulted to that position, but it's like very disempowering to be in that position.

Nicole:

And I think it's worth naming with you that like.

Nicole:

You know, despite what you go through, like, with your health, like, you're such an incredible friend, like, you're so consistent and loving and, like, you know, just, like, order me flowers or, like, order me little gifts and, like, how was your prison visit and, you know, like, how are you feeling?

Nicole:

And it's, like, it's not, like, a one way thing, do you know what I mean?

Nicole:

And I think that's what gets me with chronic illness is like just because someone isn't, has an illness like that isn't the totality of who they are right and what they can give to the world and like you know like you're so creative and you've like supported so many people who are like navigating this stuff who are just like fucking lost and terrified like especially with your instagram and people who have like the grief around having like hysterectomies and things like i think yeah like it you know like it isn't about like like worth of productivity, but I think it is also worth naming that like, you can still give so much, right?

Nicole:

Like in terms of like, people can still receive so much love and care from you.

Nicole:

And obviously there's times when you really need it, like if you're in hospital and, but like you said, like, it's kind of, yeah, it is give and take.

Nicole:

And I think like when it is a more like collective thing, like it does feel.

Nicole:

yeah, more kind of like nourishing or liberating somehow.

Amani:

But yeah, I just,

Nicole:

I just want to thank you so much for your time.

Nicole:

And like, yeah, let's definitely do some other interviews about, you know, like organizing ableism in general and like, you know, navigating like the hospital, like medical system.

Nicole:

Like I'm sure we could talk about a million and one things, but I just wanted to ask if there was yeah, anything else you wanted to share today before we finish?

Amani:

I think, yeah, we could speak for hours but I think I just wanted to respond to what you just said is that, like, thank you so much for saying that, like, it means a lot and it made me tear up, but I, so I really appreciate it.

Amani:

And I think that that's what I kind of want to finish on is that something that people without chronic illness, if you're friends with someone who has a chronic illness, something that can be just such a gift to us is when people notice the way, like, all that you just said, like, when people notice the ways that we give.

Amani:

So I.

Amani:

I can't do the things I want to do for people.

Amani:

I can't go and, I don't know, whatever they are, like acts of service, right?

Amani:

Like one of my love languages is acts of service, but I can't do that.

Amani:

And so I show up with other, in other ways that I can do, whether it's like, you know, like emotionally supporting someone or like checking in or remembering things, whatever it is.

Amani:

And I think like with friendships, like the.

Amani:

I'm so grateful to have the friends I do because they, they see the ways that I give, so it's a balance rather than when you, like you say, when you have chronic illness, you can feel like such a burden and I like a sort of like, you know, you feel like you're a drain on people.

Amani:

And that you have to, like, pretend you're a lot more okay than you are, which I do all the time, to be honest.

Amani:

Well, not all the time, but, like, a lot of the time.

Amani:

It's just, that can be very exhausting, and I think maybe I want to, like, finish on sort of saying to people that might be listening with chronic illness, like, you're not a burden and if you haven't found your tribe of people that understand that like you will like i didn't used to have people that noticed the ways that i give and sort of the ways like felt like it was more one sided and i obviously you know it didn't work out in our friendships and But I think also I hadn't understood what I needed from people and now I feel like I've got to a place of having really great friends around me who, like you just said really beautifully, like is noticing the ways that I do show up and give and try to show up and to...

Amani:

Like, yeah, I just feel like people with chronic illness need to remember that it can be incredibly lonely and it can be really hard to find your tribe of people when you can't leave the house most of the bloody time.

Amani:

But they are out there, whether it's through social media or whatever it is.

Amani:

Or through sticky conversations, you know, like I've had friends who I haven't known whether we could get to a place of, you know, understanding each other.

Amani:

And then actually all we needed to do was like communicate about it.

Amani:

And I think for people who want to support someone with chronic illness, like, start the conversation, because it's very hard when you're the one living with these things to know whether people want to go there.

Amani:

And I think if you can start the conversation, like, it literally can change a life and save a life.

Amani:

Like, if you want to...

Amani:

try to support your friend with chronic illness.

Amani:

Like it just, when people do that, it just makes me feel so much less isolated.

Amani:

So, sorry, my brain and my cognition has completely crashed.

Amani:

I have no idea if I just made any sense.

Nicole:

No, you did.

Nicole:

You did for sure.

Nicole:

And like, this was, yeah, definitely a huge, like, use of energy.

Nicole:

And I hope you can.

Nicole:

Have a rest now and watch some good trash.

Nicole:

That's the other good thing is that we have good trash recommendations because we're both having like long periods of like being in bed.

Nicole:

But yeah, I just wanted to say thank you so much for your time.

Nicole:

It's been amazing.

Nicole:

Like I knew it was going to be moving because you're so articulate and powerful as a speaker and a writer.

Nicole:

And yeah, if anyone has.

Nicole:

Ever ordered the medicinal herb coloring book.

Nicole:

That was a project Amani and I did together.

Nicole:

And money did all the incredible illustrations and kind of funds from that.

Nicole:

Like we split it has kind of gone to prisoners and then also for various kind of like healthcare costs and stuff over the, over the long haul.

Nicole:

So thank you.

Nicole:

If you've supported that book, it's still, it's still for sale and yeah, maybe Amani, you can let me know any links.

Nicole:

you'd like me to include and I can put them in the show notes in case people want to follow you on social media or read some of your writing and things.

Nicole:

But yeah, I just want to say thank you so much again for your time.

Nicole:

It was amazing.

Amani:

Oh, thank you.

Amani:

I love you to bits and I'm so glad.

Nicole:

I love you too, babe.

Nicole:

Thanks so much for listening to the Frontline Herbalism podcast.

Nicole:

You can find the transcript, the links, all the resources from the show at solidarityapothecary.org/podcast.