Bringing disabled women together, mobilising
and sharing through lived experiences

My experience as a patient has rocked my sense of self to the core, and one of my core values – regard for my profession as a Psychologist. Experience as a patient has extended and deepened anything I learned about psychotherapy and psychology, in training and at universities. My predominant experience of living in my body in recent years has been about pain management (and lack of) and debilitating bone deep exhaustion, to the point my brain no longer works – I lose speech and language, and it is all I can do to breathe. How patients are treated, how much work it is to be a patient, how systems are set up for the organisation and not the people within them, are all things I’ve been reflecting on.

What I now recognise as the harmful psychiatric perspective of ME/CFS that had sifted through into society – of ‘type A personalities’ and over achievers, adopting a ‘sick role’ – is a poor and damaging explanation of what is – in reality, a complex multi-system neurological condition that we just don’t know enough about to be able to treat it. These were beliefs I had soaked into my skin in the absence of alternative narratives. I can’t place their origin (in my life experience) but I now spot where they came from. This has been crucial – the ‘naming’ and attributing of responsibility to its rightful place is crucial in separating out what is me and what is not, what I need to carry and manage and work on, and what I can leave by the roadside as excess baggage that is not mine to carry.

Pursuing therapy to find the thing that was making me sick was frustrating, what I continued to find were layers of society and patriarchy offering narratives that were systematically constructed. I cannot be grateful enough to the therapist who sat with me unpicking all these things, also learning alongside me as I shared new knowledge and the research I was uncovering. The therapist took my word for my experiences. What happens for so many patients is that the healthcare practitioners they work with, even unwittingly, gaslight them through the subtle questioning of their experience – it is essential that practitioners hold open the possibility of society structures and narratives as being untrue, that they don’t know any more or any better than the person in front of them, and that the patient’s experience is not questioned, however well meaning their approach. If either or both parties are unwitting in this meeting it can add a greater burden to the patient.

The best therapy is equality – in finances and housing, healthcare access and treatment – and the best therapy has to be collaborative, based on an equal footing between patient and practitioner. As such it is imperative that therapists especially hold a political understanding and awareness of society and its many inequalities – racism, sexism, ableism, are all impacting on the air we breathe – if this isn’t recognised, it can exacerbate difficulties and increase the level of internalisation for an individual. Certainly, the work will not be therapeutic.

In starting a career in psychology I had a belief in science and its communication as being sound and fair. In living with a chronic illness I see how naïve that was – how research can be founded on judgement and societal stereotypes, how communication of research can be founded on those same societal narratives and structures of patriarchy – the fundamental baseline of who gets listened to.

As long Covid becomes established, people living with illness that, for generations, has been undermined and dismissed are hoping that old narratives can change, so those of us who have lived it will get our chance to be listened to. There is hope that the numbers of people with long Covid will form a large enough group they cannot be ignored so easily, while being heartbroken that this is happening to so many. For those of us who are living it, this tragic situation may contribute to having these energy limiting conditions properly acknowledged and addressed through research and understanding – and at the very basic level, of being believed. The more time passes the more I also see my arts background and writing as a part of the solution, for me, but also in changing narratives. I have been collecting books written by people about their ‘lived experience’ for years – because they are beautiful books, not always directly about their ‘lived experience’ but this happens to be a crucial part of their life. These books are different to the ones I would read as a student. And I wonder, why were these books not available, not on the lists of recommended reading. I think I am probably slow to this kind of thinking. There is so much else to focus on at the start: pressure to achieve, to compete, workloads and deadlines, applications and interviews. Psychology is a deeply competitive field, pressure to be bright and quick thinking is valued enormously. I liked the connections with people I’d make, I was fascinated with people and their lives and the difficulties they encountered. I enjoyed finding Cognitive Analytic Therapy (CAT – originally developed by a GP for the NHS), and psychotherapy practice, as it emphasised my more relational skills and fitted with how I viewed the world. It was also enormously beneficial on a personal level – personal therapy being a key element to the training (and one I think should be essential for anyone working with people, especially in a therapeutic capacity).

In time I am seeing all the things I believed be deconstructed. All the stigma and shame of chronic illness that I hadn’t always recognised working in services. There are complex ways of this happening without ever being questioned, but becoming a patient and seeing the other side of the fence things become clearer. Identifying and naming the sources and the structures, of the misogynistic approaches of medicine and society, of how anyone with a chronic illness or disability is required to ask (often repeatedly) for adjustments rather than expect society to be set up and inclusive from the outset, of the marginalisation of people of colour and minority ethnic groups, of just how much society is designed by and therefore set up for white men (although there is no great health care service for men with chronic illness either, but diagnosis can be made more quickly if you are a man than if you are a woman or person of colour). It chips away at all the challenges I have had to overcome within myself – that these were all my responsibility, that I should have tried harder, spoken more loudly, or differently, or to different people. It has taken me a long time to see, it is not me and it is not my fault that I am sick. And I am sorry it has taken so long, the harshness inflicted on myself for not being ‘better’ somehow is the cruelty inflicted by society. It is for this, and other reasons, that I am glad of my training and experience, that I return to the CAT model, and Psychology, and I can re-introduce these frameworks into understanding these structures and my own internalisation of them.

Writing and art helps to make sense when there is no apparent sense to be made. This is how narratives get re written and this is how society changes, how empathy can be built and grown – through books and art and language. Psychology helps me understand – my professional life is my route, I hope, to reconnecting with others who are now in positions of responsibility for other people’s care, for whom their narratives are powerful.

What I wasn’t taught, in all my years of training and experience as a Psychologist and Psychotherapist, was that crossing through that fence from practitioner to patient, is a normal part of being human. Visiting Sontag’s ‘land of the sick’ is a normal part of life. That it is barricaded with ‘do not enter’ and ‘hazard warning’ signs does nothing to ease the pain of those who arrive, often unceremoniously. And, perhaps, as healthcare professionals, we uphold a fallacy that we hold the keys.  If we were better prepared, if society was structured around this expectation and acceptance, the world would be a very different place.

This is part of the Sister Stories series.

I’m hungry but I don’t want food. I’ve picked my favourite thing and it tastes bad. You’ve just asked me what I want and I’ve stared at you saying nothing for an awkwardly long time. Someone’s having a party and I’m looking at the menu online before I say yes, I’ll be there.

These are the things that happen when you and food are not always friends. If reading about my experiences may be triggering, feel free skip to the end where I’ve listed things that I’ve found helpful.

One of my earliest memories is discovering that yummy-looking food had medication hidden in it and tasted nasty. Another was being punished for not eating something I now know I’m intolerant to and causes me pain.

With support from friends – patient, understanding, supportive friends – I now eat a much wider variety of foods. I try new things more often than saying no, though I’m still quite particular. I think about my nutritional needs and respond to them as best I can, and accept when I can’t. I ask for more.

In my mid-teens, I weighed about 12kg. I’d been this weight since starting primary school. Every year, I’d be weighed, and see a consultant for my main condition, and a dietician. My weight would be noted, my food-related health issues would be noted, I’d be told to eat more and drink supplements, and then be sent away for another year. This went on for some time, until I switched to adult services which didn’t include a dietician.

I drank the shakes, sometimes, but that was it. I’d occasionally, very occasionally, try something new, but only if I fully had figured out what it was made of and what it looked like and what it smelled like and what the texture would be and if there would be consequences to me not liking it.

I’d hide food, throw away food, give away food, and lie about how much I’d eaten and drank. I’d try to make my leftovers look like less, try to eat the minimum amount I could get away with (but often couldn’t manage that). Of course, I was being “fussy” and “stubborn”; wilfully misbehaving for no reason, apparently.

In secondary school, I would say I had a headache, or backache, and be allowed to go and rest instead of attending biology lessons on nutrition and digestion. Yes, the A* student got away with skiving, as I’d read and could recite the textbook anyway. I didn’t want to compare again how my body didn’t work with how it should work, or what I ate with what I should eat. Certainly not in front of my friends and the whole class. It was my fault that I wasn’t good enough (or so I had been told), and I was too ashamed to confirm that again in my science book.

A very helpful community nurse took an interest once, and got me to write a food diary. She then pointed out that I wasn’t eating enough, drinking enough, or eating the right foods. As if I didn’t already know that. She pleaded with me to make changes, pointing out how much better things would be if I would only do as I was told. I felt even more ashamed, and nothing changed.

Nowadays, I’ve read that avoidant behaviour can be considered an eating disorder, particularly if there are impacts on a person’s health. People are meant to get supported, not shamed (though I’m sure that how things are supposed to go may not match up with everyone’s experience). The reasons behind a person’s choices are listened to and explored.

When I read this for the first time (thank you disability twitter), my brain exploded with “Why? Why did no one check if I had intolerances or sensory needs? Why did no one try to support me? Why did no one care enough to talk to me, really talk to me? Why did no one tell me it’s OK to not like things?”

I have my own answers to these questions, as right or wrong as they may be. Having one set of medical needs was complicated enough; why would anyone go looking for more? I was an embarrassment by not eating at social gatherings; why would what was considered bad behaviour be rewarded with attention in that decade? Kids with eating disorders were thought to look or behave a certain way; why would someone who doesn’t fit that pattern count?

And of course, there’s the usual answer: Disabled kids are too different. Mainstream services don’t cater well for disabled children and young people; specialist services focus solely on their specialism. People fall through the gaps.

I hope this has changed in the last decade and a half. I have.

My weight is low but stable. My body is an entirely different shape, having completed puberty 10 years late. My health is more reliable: I usually now don’t get constipated or feel sick or struggle to breathe through my nose. During childhood, this was my normal.

The only times I’ve got really ill as an adult are when my weight has dropped due to stress making me go back to old eating patterns. I’m more careful now with my stress levels, and have high-calorie low-effort foods ready and waiting.

I try new things all the time now. I make a point of it, a great big “F*** you” to the people who gave up on me food-wise. Sometimes it goes well, and I’ll be hooked from the first taste. Occasionally, it goes badly, and I’ll have a 2-hour panic attack after a single sniff.

There are 2 reasons for this great change:

1. Independent Living. I’ve been living independently with 24/7 support for years now. I am in charge in my own kitchen; I’m in charge of my own shopping. If I want to try something, I can cook it exactly how I think I might like it, knowing that the worst thing that can happen is that I order pizza instead. If I want to eat at an unusual time, I can. If I want to change what I’m having last minute, I can. If I waste food because I’ve over-estimated my appetite, it’s my money and no one else’s that’s been wasted, and I can learn to cook things that reheat well the next day or freeze well. If I have a sudden craving and no energy left to make it happen, Deliveroo will bring ready to eat goodness (I don’t like the gig economy, but in a “I feel a bit faint” situation, it solves a problem). In places where others control the menu, I don’t do well, and usually eat out or order in. At home, there’s no pressure, no consequences, no drama. I’m free to do what I like, whether that’s eat toast for lunch every day or spend an hour batch-cooking a masterpiece.

2. Friends. Great people who know that face that means “I don’t want to but don’t want to disappoint you” or “Give me time, I’m trying to figure out if I’ll like that” or “Yes, but not today” and know supportive responses and accept that. Great people who will trade a bit of their food for a bit of mine, and make it a 2-way thing between equals instead of a dominance/submission thing. Great people who will sit by me whether I greedily destroy the lot without sharing or take one look and metaphorically run away. Great people who will share recipes and think things through with me and suggest ideas, not make demands. Great people who won’t talk about stressful topics before or during meals, or point out how unappetising something looks, instead building a happy and safe atmosphere. Great people who ask “You want some?” only once and listen to and respect my answer, and don’t ask “Are you sure? No? Really? What about some of this? Or this? Or this?” until you give in and eat something you didn’t want. Great people who won’t stare at me to check if I like it, or look at my full finished plate and sigh frustratedly, but will stay on the main topic of conversation and understand my body doesn’t always give me a choice, and that my likes and dislikes aren’t always predictable. Great people who won’t buy food as a gift and create an obligation, but will join me to celebrate at a favourite restaurant and create a good memory. These are the people who have got me to where I am.

Things I have found helpful that may be useful to others, and would tell my younger self:

– Find out if you have any intolerances. Cutting stuff out without medical supervision can be dangerous, so seek support that will listen to your experiences and ideas.

– Learn what your body needs. If you already have a medical condition that affects how your body works, chances are that your nutritional requirements might be different to the recommended averages. If you can, find out safe maximum/minimum values for different nutrients and water. It’s easier to check against a known target than an unachievable “more” and “better”.

– Get good at cooking the things you already like. Have fun with it. Make the best ever version of it.

– Branch out from where you’re comfortable. You don’t have to try something completely different if you think it’s going to go badly. Go with something similar to something you already like.

– Grow stuff to cook. It tastes completely different. I find a lot of supermarket vegetables are full of excess water and sugar, and the fruits are pretty flavourless. I grow and prep and freeze and have food that actually tastes like food available for as much of the year as I can. Farmers’ markets and farm shops can also be pretty good, though some charge more.

– Go to a restaurant with friends and all order a different starter and a side each to share. This way, you have access to new food, prepared for you, but also a selection of reliable favourites with no obligation to try or not try. You can do the same with puddings too.

– Batch cook and freeze. This reduces the effort of preparing food when you’re just too tired.

– Keep standby snacks and shakes. Have options around that aren’t proper meals and aren’t nothing. There may always be days where you look in the fridge and go “nope”, and so I find having reliable not-quite-but-it’ll-do choices available can minimise the impact on health whilst taking the pressure of completely failing away.

– Say no. You don’t have to try anything at any time that you don’t want to. You don’t have to continuously challenge yourself. You don’t have to be perfect every day of every week. You don’t have to change unless you choose to, in your own way in your own time, without being driven by pressure from others. You don’t have to live up to someone else’s unrealistic expectations of how to take care of your health. Figure out what’s important to you right now and how you want to do that. You can be “weird” and “picky” and “boring” as much as you want.

– Relax. The people who best support me to eat new things are the people I can relax around. Put on your favourite music or a good film, grab a comfy cushion or a blanket. Make sharing food part of evening of pampering or games and laughter. Zero stress environments are the most successful for me.

– Talk to people you trust. Some of them may have similar experiences or positive attitudes, and I value their support. This blog was sparked by someone I mentioned all this to in a chat who instantly framed it as “unmet access needs” and I swear I nearly hugged my laptop.

From a contributor who prefers to remain anonymous