This is a really special blog post, and the words are not mostly mine, but those of a brilliant person, who is my current writing mentee. Twice a year, I work for free with someone who could not otherwise access a mentoring or writing course and it is one of the best things in my life. I want to encourage writers and would-be writers and also understand more about the barriers that may be faced. Most frequently, those I mentor are writers who are disabled and/or chronically ill (much depends there on how one wants to define oneself). I myself manage some neurological damage, periods of intense fatigue and a pain condition we have not got to the bottom of, but my primary challenge is a mental health one: owing to a background of sustained and complex trauma I have dealt with OCD, generalised anxiety disorder, prolonged insomnia, nightmares and flashbacks, depression and I have dissociative episodes. For the past few years I have also had additional caring responsibilities for my eldest, who has been seriously ill. So it means the world to me to help others release and sustain some productive creative work and, really importantly, to look at what we can do in the publishing and writing communities to make this more possible. So what follows is an interview asking some of those questions, embedded in a superb piece of writing about illness, disability and the world about it.
A final point: I would like to say thank you to Indigo Rose for taking this on. You’d have to mine a lot of emotional and physical resources for this account. Then I want to say this: the last few years have been so hard for me and for my family, but over the past six months. exhausted and not knowing how to manage it, I have had this lovely person watching over me and giving me advice on managing stress, fatigue and pain.
Here she is
Tell me a bit about yourself and what you’re writing.
I am Indigo Rose, I am 46 years old. I am a chronically ill and disabled* writer. I am new to writing and in the early first draft stage of my projects.
My personal situation is that I am severely affected by multiple chronic conditions which affect many parts of my body. I am a power chair user and dependent on full time care and welfare benefits. Writing is not something I am able to do consistently, I have to be inventive and patient. Despite that, writing is something I enjoy and find healing and I also believe that my situation has contributed greatly to my feeling that I have something new and interesting to say.
I am currently working on a novel, a memoir and a nonfiction book, the latter of which is based on my experiences with the medical profession. All of these have a similar theme, that of two worlds-the sense of a “real world” and its rules where you aren’t accepted and can’t be considered a success, and the world you can attempt to create yourself from the margins, where the rules suit you and you can thrive. In all my work I am asking a question, can the two worlds come together or can the dominant world, the one with the power and status change to include those it currently judges poorly or expels?
I’ll start with a brief rundown of my story with chronic illness, not because it’s uniquely interesting but because it’s horrifyingly common. I can’t talk to you about my ambitions and my barriers without you understanding the reality of chronic illness which includes neglect, disbelief, mockery, gaslighting and medical negligence. I thought my case must be a one off, just bad luck or bad doctors but I’ve heard versions of my story told back to me on social media and in support groups day in day out for the last decade. This is happening all over the world particularly to people already marginalised. Of course many people are fortunate enough to have a more straightforward experience. The more well known your illness is and the more privilege you have the better your experience will likely be. I want to share how things are for the rest of us. Those of us you are less likely to encounter but who see and experience life from the margins. Who have stories to tell if you can help us tell them.
I come from a working class family in an affluent part of south east England. I was a sensitive, different child and I spent my teenage and young adult years believing I had to deny my difficulties in order to be able to function in the world so I learned how I could push them down and myself forward. As a result, I was the first person in my extended family to go to university and I got a career in TV, working and living in London. I had some minor long term health issues but I prided myself on managing them myself and very rarely saw a doctor.
At the age of 26 things dramatically changed when I became very physically unwell. I collapsed at work and was sent to a walk-in clinic in a cab. That was the first time I had seen a doctor and the first of many times I was told I was experiencing stress. My life was not stressful but they insisted that as a single woman with a career I must be. That theory held with every doctor I saw. I was gas-lit into believing all my physical symptoms were symptoms of either depression, anxiety or stress. It made no sense but after my tests came back normal I had to believe they were right. I later discovered from my medical records my tests weren’t normal. I discovered multiple abnormal test results were kept from me and instructions from specialists ignored. This meant severe and disabling conditions, (one of which would years later almost kill me), were not treated. It was agreed between doctors that no further tests should be done as it would just somatise me further. I was given anti depressants being told that it was not for depression but for fatigue. I said they didn’t help the fatigue and they just kept increasing the dose. In my medical records the fact I was on these was used repeatedly as proof that my problems were psychological. To add insult to injury those drugs gave me a severe life threatening syndrome but of course I was told the symptoms of that were psychological too. I didn’t call an ambulance when I had these episodes because I had been told not to seek medical help for any of my symptoms because “we know there’s nothing physically wrong”. If I had, I now know I would have been admitted to intensive care. However, I was successfully gas-lit and believed that somehow there must be something so badly wrong with my mind that it was capable of creating these symptoms.
Eventually one of my issues was partially treated but because the doctors had down-played it as incidental and unrelated to my symptoms, when I started to feel a bit better I truly believed I had finally fixed my mind.
Because of that I carefully got back to the “real world” albeit part time work rather than full time. I had some setbacks but because I was so convinced it was a psychological issue I stopped doing work that I loved (office based) and decided it would be better for me to get a stress free physical job. Not long after that I crashed catastrophically once again at work. My family told me I look ghostly and skeletal and were preparing for the worst during that period. My state of health was obvious to those with eyes that wanted to see. I lost the ability to walk and truly felt I was dying.
My GP laughed when I told him and refused to do any tests. I had to ask my family for money that was put aside for if I got married to go private. That private doctor diagnosed me with the condition that almost killed me and for the next eight years I would be diagnosed with the multiple serious conditions that I had all along, plus some that had been triggered by those conditions going untreated for so long. All interventions now are attempts at stabilisation and slowing progression and I am left severely unwell and disabled.
As a result I have had to come to terms with the fact that society doesn’t really like severely disabled people. It has been a shock to suddenly be made to feel you shouldn’t exist, that attempting to meet your basic needs is somehow rude and entitled. The way disabled people are excluded, abused and neglected has shocked me. I have terrible stories just from my own experiences. Stories that are common-place in the disabled community. Stories that are not heard and would not be believed about our reality. Certainly stories that most people would not want to believe are true.
An example which may be more visible now is the way those of us who are clinically extremely vulnerable to Covid, are not being considered when it comes to the covid strategy. We have not been given any way to manage our risk, particularly those who work or have children in school. There is also no support to help us exist in society safely. This leaves us with the stark choice of risking our lives literally or with the prospect of long covid on top of our existing issues, or to stay locked away. When we query this we are usually faced with the argument that vulnerable people were vulnerable before the pandemic (to flu etc,) and no one worried about wearing masks and ventilation then. This tells us that instead of finding out we have been excluded and discriminated against in the past and wanting to fix that, people would rather say, “but we’ve always discriminated against disabled people and it was fine so I want to continue”. This attitude unfortunately is not a surprise to me and not unusual. It’s hard of course because we didn’t need another such significant way to be marginalised when we were already barely coping. Our situation always just seems to get worse, not better. That’s hard. There is a myth that we all get an abundance of support and care. The reality is very different. I have received help, for which I am very grateful but I am also fully aware that the rare times I have received help have been in part due to the privilege I have being a white, educated person who, although was raised working class and now reliant on welfare, can pass as middle class. The discrimination we face is extreme and yet it has not yet been fully acknowledged by mainstream society.
There are only a fraction of us who are able to access the writing and publishing worlds. Even those who do I would imagine must struggle immensely. I exist within a society that excludes me in multiple ways. I’ve learned my very existence triggers the world to shame, punish, gaslight as well as physically and mentally harm me. My only means of escaping that has been to accept and then embrace that isolation. I’m attempting to create my own world, with my own rules and values. A place where my life matters. If I want to feel like a valuable human I have no choice but to become invisible to you, if you can’t see me you won’t hurt me.
What are your ambitions in relation to writing?
I have two key ambitions. One is, as it stands, more fanciful and distant and one is more positive and realistic.
Ultimately what I want is my stories, perspectives and voice to be heard by as many people as possible. I want many disabled and chronically ill people’s voices heard. I believe what we have to say could open people’s eyes, give a new perspective, even change the world. In common with all marginalised people we are canaries in goldmine- we experience and see first hand the dark recesses of the system we live under, we can warn you about what might be coming. As someone whose lifestyle was once represented in culture and literature- the single career girl living in the big city, it amazes me that my lifestyle now is not represented at all. Many people won’t feel comfortable using the word lifestyle when referring to disabled people, but why is that? Lifestyle is the way you choose to live your life with the hand you’ve been dealt. I am the same person now as the person I was then but with so much more, depth, insight and experience. Being disabled, for me personally, is not just one aspect of who I am, it is the biggest factor in everything I do, every decision I make. It heavily influences who I am in all areas of my life. It is with me all the time. Being disabled is as much a part of me as being human is. Being able to use my imagination to work within that tight restriction and create a valuable life is what I do. This is partly why disabled people have so much to offer the creative industries. We are used to finding innovative and interesting routes though difficult, unusual and complex situations. My brain works entirely differently to how it used to. My perspective has changed. The “real world” and its values you know crumples around you and you have to build a new one on the fringes. I have so much more to offer now but no one is interested in my life anymore. I’d like to be a part of changing that.
I’ll talk more about the barriers to me achieving this later but they seem to me to be legion. This is why I am more focused on my more accessible ambition.
Due to the severe impact on my health caused by pushing myself too hard in the past, I have had to change my understanding of what ambition is in the last few years. Ambition as we understand it in capitalist society has put me in situations that have dramatically impacted my life for the worse. More than that though, ambition has told me that who I am as a disabled person, is not good enough. I should always be aspiring to be less ill and disabled. As a disabled person I get that message enough already. So my new ambition is to accept and love who I am and my situation. This is my life. It is not less-than, a failure or a life to be pitied. It is as worthwhile and valuable as anybody else’s. I know I want writing to be part of who I am, not focused on a particular goal, just having fun with it. I want to work out what kind of writer I am and how I can make it work within my limitations.
I’m working out my methods so I can make writing fun rather than work that will stress me out and inevitably compromise my health. For me writing needs to be therapeutic, healing and supportive of my health, and to achieve this I experiment with all the different aspects that go into writing from planning, research, learning to things like working with stream of consciousness writing. I approach it as a game, or a puzzle to be solved.
This is partly because I enjoy doing that and it gives me a positive focus outside of everything else. It’s very difficult to have fun in my situation. I can’t eat the food I want, dance, walk, go out socially, go to events, drink, play sports, do crafts, I can hardly even sleep. The list of fun things I can’t do seems endless. That’s why writing for me has to be fun. Everyone deserves that.
What barriers do you face due to your illness/disability in relation to those ambitions?
Most of the barriers relate to my first ambition, to get my voice heard but some relate to my ability to write, even as a positive, fun activity which is the goal. Each barrier I talk about I also know is not just personal but also more generally systemic in the disabled and chronically ill communities,
Quite simply my symptoms and level of functioning restrict how I write as well as how well and how much I can write. This also prevents me from looking forward to the big dream of getting my voice heard, how could I engage with the other aspects involved such as promotion and connecting with others just as two examples. There are very restrictive limits on what I can cope with. Energy levels, pain levels, psychological issues and sensory overload are all examples of barriers to both writing and the extra work that would be involved in getting published. I am new to finding out about the industry but already I can see words and phrases that scare me because they seem impossible for me e.g. networking and finding community, getting beta readers, joining writers groups. These seem to be fundamental parts of being a writer but when I only have tiny windows of ability to function I may not be able to partake in these activities. I use my imagination to work with my health related restrictions. I play with and adapt the whole process whether that’s dictating flashes of inspiration to my phone, creating a structure on scrivener, streams of consciousness typing, or small amounts of editing. All aspects of writing are tough for me and I enjoy the challenge but even then I worry it won’t be enough.
As I said before, my story is not a rare story to those of us who have been through something like this. It’s traumatic, not a one off trauma but one that surrounds you for years or a lifetime. This often leads to PTSD or more usually complex PTSD. We are not immune to trauma from other causes either, in fact for a number of reasons, (intersectionality being one huge one), we are probably more likely to have experienced trauma as well as the trauma of illness and lack of bodily integrity and the way we are treated as a result. I cannot avoid most of my triggers as my triggers include doctors, medical treatment, agencies which are there to help me, my community and friends.
Although some of my trauma is in the past, a lot of it is still happening. I am still in it and I imagine I will be for the rest of my life. That makes it extremely difficult to feel safe to share my stories, ideas and perspectives. It’s hard to heal and put your head above the parapet while you are still in traumatic situations. It also makes day to day tasks challenging, (even positive ones such as writing) and it makes the idea of publishing almost impossible to imagine.
I carry a lot of shame, and I’ve seen how society shames disabled people systemically on a daily basis. We are made to feel like we aren’t trying hard enough, or we are burdens, expect special treatment, don’t contribute, are faking or being melodramatic. The ways society has to shame us seem endless. For as long as I could I fought to hide my situation by not using visible aids when I needed to, taking risks to do things I knew were dangerous to meet the expectations of my friends, pushing myself into work that wasn’t sustainable, all to prove I was one of the disabled people who fought to overcome. It didn’t work. When I suddenly became so ill and disabled I didn’t have the option to hide it anymore, attitudes towards me shifted fast. Friends spoke to me as if I was a different person, not the person they had been close to for 20 years. Strangers treated me differently. Everyone spoke to me from an emotional distance, if they spoke to me at all, mainly I was ignored. People just fell out of my life and were replaced by endless assessors, form fillers, people trying to work out who you were and what you deserved. I had not changed as a person, I had not changed my attitude, my sense of humour, my love and interest in people or my desire to support them. It was just the visible disability and the fact I could no longer hide those visible markers- the bed, the wheelchair, the poverty, the need for adjustments (email instead of phone, accessible restaurants on the rare occasions when I was able to meet up). Those were the things that made people say “you are too much”. I feel who I am and what I have to offer is not enough to compensate for having to make those relatively small adaptations. If even my closest friends don’t think I’m worth it, who will? The shame of being such a burden is huge. Maybe, if I’m invisible and don’t make a fuss, hopefully I won’t bother people.
Although many of us have these issues with trauma, as I’m sure most people are aware, we do not have the best mental health care on the NHS. There are additional barriers to anyone who is intersectionally marginalised. The barrier I personally struggle with the most is that I have had my physical health issues blamed on mental health for many years with catastrophic consequences. As I have explained this is not by any means unusual, particularly for women. When mental health issues from trauma came to the surface for me, I felt effectively shut out from seeking NHS support because I knew it would affect my physical health care, which is already less than optimal. After all, look what happened when I had no mental health issues. They not only told me all my physical symptoms were due to mental illness but they did nothing to treat or diagnose this supposed mental illness, except put me on drugs that almost killed me. So, as you can see, trauma issues are an ongoing barrier both to enjoying writing but also a barrier to being able to interact with others and therefore to being seen and heard.
There are so many societal barriers, that I can’t cover them all here. Society does not have a place for disabled people. This manifests in the benefits system, the care system, the medical system, in the law, in the workplace, in communities and in friends and families. We are not wanted. Whether we are denied access, not supported to fight for our rights, or because our voices are simply excluded or misinterpreted. We don’t have access to the same rights and privileges as non-disabled people do. That can manifest in small ways such as that I cannot create a set up in my home to be able to write comfortably or safely, or that my local writing group is held somewhere not wheelchair accessible or covid safe. I feel I can be excluded because I don’t think the way “normal people” do. I don’t, or can’t, adopt the mindset based on the predominant capitalist ideology. That can be misunderstood as not caring enough, or not trying hard enough and it can mean being rejected before I even start. Disabled people, like all marginalised people, face both micro and macro aggressions on a daily basis. This can make me unwilling to engage with writers and the industry because while it should be open and creative, unfortunately from what I can see, the industry itself seems very rigid and built around capitalist ideologies that don’t work for me.
We will all have different stories about being excluded but I would bet that all our stories will be confronting and certainly challenging. Us speaking our truth is asking people to acknowledge the way society and individuals inadvertently contribute to our marginalisation. Whether that’s not wearing a mask, parking on pavements or drop kerbs to pick the kids up from school, supporting banning straws, not wanting to pay extra to make your business accessible, not making accommodations for friends. On top of that you have to face up to how many of us there are, how we are suffering, how we don’t bring it on ourselves and how it’s possible that one day they could be one of us. Disability is one of the only marginalised groups that you can become a part of any time, perhaps suddenly and certainly against your will. That scares people because they see disability as negative in large part because of disability tropes which I’ll come to later. If we had more diverse disabled voices, then people could see the richness and reality of our lives and then hopefully wouldn’t be so afraid of us.
Of course, people are also scared of our physical and neurological differences. They don’t know how to interact with us. Again, we are such a huge percentage of society, if our faces and bodies were seen and our voices heard, then so many of these factors would cease to be scary for people.
This is why we have very few allies. Not many people want to take that on, make that many changes to their own lives, or question whether their views support disabled people or exclude them. Often it seems a step too far even for those willing to be allies for other marginalised groups.
Whatever we do we are judged harshly by society. If we don’t act positively enough, push ourselves hard enough, “positive think” our way out of our limitations, then those limitations must be our own fault. Even if we do all those things, we can’t be doing it well enough because we still have some issues. Then, when we’ve been fully brainwashed to not dwell on our limitations, we face the benefits system where you have to describe in detail all the limitations and symptoms you have been told to deny, minimise and ignore for so long. When you are ill anyway, remembering to not put a positive spin on your situation when being assessed is difficult and traumatic. Not only are you facing up to your reality, you are also admitting you are a failure to society. It’s pretty dark stuff.
I’ll talk more about the barriers that the benefits system puts in our way shortly as it is a big part of how society sees us. It is presented that we receive easy to claim benefits and perks when really it is exceptionally difficult to access these sub-par attempts to make up for the barriers we face. The multiple, regular assessments we have to endure for each small aspect of the “perks” we receive are seperate, and can include a huge assessment each for two seperate disability benefits. Then there are assessments for a blue badge, care, district nurses, getting a council house, adaptations to a council house, getting a wheelchair, and more. That doesn’t even include all the doctors, nurses and therapists you have to see. That is actually a barrier to writing in itself because each assessment has to be planned and is exhausting and stressful. Writing is just not possible when those assessments are on-going. It’s no wonder, the positive attitude we’ve been bullied into for so long sometimes spills into those assessments and leads us to say we can do more than we can, causing us to underplay our symptoms and difficulties. It’s what society trains us to do! It’s almost impossible to change overnight. We put a positive spin on things to please people, to be accepted and not shunned. Obviously the benefits system doesn’t miss an excuse to deny you the money you need. Non-disabled people are led to believe that most people over-play their issues to get benefits but I cannot possibly see how that can be true because society and the system are set up to encourage people to underplay their issues.
In the past people have expressed discomfort around my wheelchair, tinted glasses or my catheter. For other people it could be their guide dogs, hearing aids, speech impediments or. The sense that we will be extra work, extra responsibility or a burden. Sometimes people feel resentful of us because of our benefits, or parking spaces or all the support and the mythical, cushy lives they believe we live. That can impact how likely they are to provide us with or help us access adaptations to enable us to access certain things.
I worry the same judgement and discrimination I get from society will also come from other writers, potential agents or publishers who might think I’m not a real writer because I don’t write enough or in the right way, or I don’t have the right mind-set and aspirations.
All poverty means you are consciously prioritising survival every day. Add serious health issues into that and survival takes up most, or all of your life. No matter how passionate I am about writing, survival will always have to come first. Like many disabled people I rely entirely on the welfare system which is corrupt and badly managed. I speak about this from experience. We rely on the safety net but the safety net is extremely unsafe. If I fall through there is nowhere else for me to go.
One other stark reality of the welfare system is that as much as the media and politicians like to tell the “real world” otherwise, the system is not set up to allow disabled or ill people to have a positive outlet, such as writing in their lives. The government has no understanding of how chronic illness and disability works and no interest in our worlds/lives, or our intrinsic value and quality of life. Essentially the system dehumanises us in multiple devastating ways. They limit us, rather than support and encourage us, in multiple ways. It is a binary system whereby they assume you are either entirely disabled (where it is assumed you have no type of hope or ambition or desire to do anything outside of survival), or you are temporarily unwell and planning to build yourself back up to paid full time work in a couple of years. It is very difficult for people on disability welfare to pursue writing. I will give a couple of examples here because I do think this may be important for the industry to understand.
So what happens if, (due to limiting all other aspects of their lives including personal care and social interactions), a person can write 500 words a week. Does that mean they are getting better and can work part time? No, it doesn’t. Will the DWP see it that way? If they think your writing is proof you can work, you would be forced to give up writing in exchange for paid work. You will also get a big chunk of the money you rely on to help maintain your health well enough to be able to do that small amount of writing, taken from you. People might ask, how would they know? You have to report every small change in your circumstances whether that’s income or changes in health. That will trigger a reassessment.
When I was able to work part time earlier in my illness, I had my top up money taken away because I hadn’t managed to get back up to full time work within the requisite time frame. When I asked them, in tears, how I was supposed to support myself, they said I should stop working and go back onto disability welfare. When I said I didn’t want to stop working and I wasn’t ill enough to meet that criteria they had no solution for me.
I considered doing self employed work, (not writing at that point but for arguments sake let’s say it was), because it would have been easier to manage around my illness but they told me I had to be earning a certain (high) amount of money per week or they wouldn’t allow it. I don’t know if things have changed since then, as it’s been a long time since I’ve been in a position to even consider work. From stories I hear I don’t think much has changed. In fact it may even be worse. The self employed rules now seem to say that if you are self employed, they will assume your income based on the idea you are working full time rather than what you actually earn. This then affects your ability to claim other means tested benefits as it is assumed you have a much higher income than you do. I remember many self employed part time disabled people in tears, having to give up work they loved because they could no longer afford to do it. So I hope from this you have an idea of how the benefits system is a huge barrier for anybody who would like to write as a part time career.
Any income is problematic because any money we get is taken off our benefits, which is fair. However, if we have more than a certain amount we will suddenly have to contribute towards our care cost which we will unlikely be able to afford. As already discussed, if we have to register as self-employed the situation is even more dire. By making money generally, we often become even more poor than we already are and cause ourselves a lot of admin and distress. Getting paid for writing might not always be a good thing for us, despite living in poverty.
So you see, this is chronic illness. This is disability. It’s not how most people seem to think it is, those who think of it at all. I think society has done a very good job of making us invisible or at best to be pitied. At first I shied away from sharing it here, wondering if I should say the things I thought people would want to hear. “Yes I have challenges but with a few adjustments by myself and you as an industry we can make it work!” and you would all say, “oh isn’t she so brave and inspirational, overcoming the odds, fighting to get that publishing deal”. I know anything other than that is disheartening for all involved but I made a pact with myself when attempting to process the trauma of the past 20 years. I would start speaking my truth and stand by it. I’ve been told my reality can’t be true so many times I have started to believe it. I believed that it must be ok to be treated this way because that’s the message I was given. No more.
What would help overcome those barriers both within society and the writing/publishing industries?
This is a difficult question and it comes with the disclaimer that I can’t speak for all disabled people in all our diversity. I can only speak from my perspective. Another disclaimer would be that I am new to the writing and publishing worlds so I do not know all the things you already do, I can only go by what I have seen so far. I really appreciate the bursaries and commitments to accessibility for underrepresented people that many already offer. These are vital and so helpful. Sadly though this won’t be enough if you want to access some truly diverse, authentic voices. For us to overcome even close to the full extent of the barriers we face we need different kinds of support from both society and the publishing and writing industries. I have no easy answers, we live in a society that deliberately excludes and devalues disabled people. It is hard for me to imagine a situation personally where I would be comfortable with having to re-enter a world that is destructive for me. These are the key issues.
The first stage in helping us overcome these barriers to being a writer is for mainstream society to understand the reality of our situation, what we go through on the margins of your world, because of your world. Value us and our perspectives. see all the positives we can bring to your lives, the changes we can make and the ideas we can bring. We are a huge percentage of society and within that we are extremely diverse. It also looks by the way like you need people like us, because the ‘normal’ world would appear to be crumbling and breaking down in every possible way, so what have you got to lose? Let us help and be open to our new perspectives and ideas, chances are you will be amazed by them. We have the ideas that you couldn’t possibly think of because they were different to you, and yet the same. We also need the decent people who live in your world to wake up, see us, understand how we are being harmed and demand change. I want you to want us to be part of the same world as you. I would like you to help us to create a world where we all have the same opportunities and rights. Many of my barriers as a writer are due to the way society misunderstands and undervalues me. Helping to change that, just as members of society, would be a huge start.
I suppose that leads us onto what the writing industry can do to support us. As I’m sure you’ve gathered by now, there is no quick fix. Some barriers seem unsurmountable. The industry seems rigid and inaccessible to me and people like me. Any accessibility interventions offered, although undeniably helpful, are only tinkering at the edges of that system. I believe the barriers need to be removed in a bottom up way. Starting from how we are perceived and treated in society. I hope that by talking about these issues I can at least make you aware of them which is a first step. Maybe you can come up with some creative solutions.
The first stage is asking yourselves if you want to do the work to overhaul the way you do things in order to allow more marginalised people access. You can only answer that question if you know more about us. Our stories are valuable and interesting so step one would be to listen, learn, believe and understand our realities in all their diversity. Appreciate what we have to say about society and people. Understand how we can give you new and exciting perspectives and ways of story-telling. You can’t support us until you understand us, who we are and what we go through. Social media is a good starting point, you can find all kinds of marginalised communities there. You can also amplify our voices using social media. Get people aware and interested in us. Not all disabled people find social media accessible so you won’t find us all there by any means but it would be a first step.
Beyond that, like a lot of marginalised people, we want to be given a platform. To do that you will need to think about accessibility in all its forms, in order to provide us with equity. Ultimately I believe that might mean a change to the way the publishing industry is run.
From my perspective as a new writer, the writing/publishing industry seems to centre around a complex, rigid framework of systems and rules. Only the writers that are able to navigate that obstacle course stand a chance. As a new writer my view is that this is due to capitalism, efficiency and making as much money as possible being the prime focus.
The publishing industry of my dreams would be a person-centred one rather than a system-centred one. You start with the writer and build everything around them. You discover the voice and then work out how to get that voice heard. Maybe that seems unrealistic but honestly I’m not sure it is. Writing is a creative industry after all. I hope that in an industry that should be about creativity, it isn’t unrealistic to hope for a system where quality, innovation and diversity comes before what is a safe bet to make a lot of money. Surely it is possible that one day it could shift away from a capitalist model and into more of a creative one. I hope the whole of society will move in this direction one day and then it will be natural for the publishing industry to move with it. The way society and industry is functioning now is leading us into disaster on multiple fronts so a change would hopefully benefit far more people.
Some things that I think could be helpful in the shorter term are
Allies- We need allies. Speaking for myself, and I have heard the same from many other disabled people, many of us don’t have allies, quite the opposite, disabled people tend to lose people from their lives exponentially the more disabled they become. Imagine how hard it is to want to speak your truth when you have no evidence that anyone will support or validate you. The only evidence you see is that people will respond by making you feel worthless and dehumanised, or tell you you should be dead. I would like support to create a world where we can feel safe being heard. Even better, one where we can feel included and valued. The writing and publishing industries could help with that, find us and then amplify our voices. There are numerous other ways one can be an ally, too many to express here. Continuing to wear a mask in indoor spaces is one simple way to be an ally that is current right now. One I will briefly mention as it is especially pertinent to this industry is language, to be an ally it is important to understand how it could either alienate us or make us feel safe and understood. There are more obvious slurs to be aware of, obviously but even language that is deemed “correct” can be offensive. There seems to be a significant discord between how non disabled people want to speak about us and how disabled people want to be spoken about. Different disabled people will have different views and reasons. Consider reading about the social model of disability but also read about how some chronically ill people might feel differently and why. It would be useful to have a background understanding of the issues we face around language but the most important thing is to ultimately have a conversation with the disabled and/or chronically ill writer you are working with and listen to their personal thoughts. An example is, most publications and organisations insist on referring to disabled people as people with disabilities or austistic people as people with autism. Both of these can be offensive to some (not all) disabled people. If you are willing and able to be an ally to disabled people and you want to dig deeper, please make sure anything you read comes from actual disabled or chronically ill people, not non disabled academics, carers or medical professionals.
Accessibility- Think about accessibility and what can and should be done within the industry right now. Some examples of things to consider would be: If you are part of a local writing community, how accessible are you for disabled people? Are your meet ups all at the same time of day? (I am unable to function at certain times of the day for example). If your meetups are in person, are they wheelchair accessible? If you work in the publishing industry, do you have flexibility around working online versus in person, even for promotion? Is there flexibility around deadlines? Would you have honest conversations with disabled writers about accommodations they might need? We are likely to say we are capable of things we aren’t because we are used to being rejected if we can’t fulfil obligations in the way non disabled people do and we won’t want to sound negative. This won’t end well for either side. Linked to this, some of us may struggle with spelling and admin related tasks due to our disabilities. I know I do. What that means is a huge amount of energy is spent trying to get that side of it right because I find it more difficult. That means even less energy to spend on actually writing. If we do get to the point where we are speaking to people from the publishing industry it would be helpful if people understood how mistakes might slip through no matter how hard we try and not hold it against us.
Understand how and why we might be traumatised by telling our stories and being seen- Understand the risk of prejudice and recurrence of trauma involved in telling our stories. I know from experience that people usually don’t want to hear new perspectives from marginalised people/ people perceived as having less value and I know what that means for me and my sense of safety. For me personally would manifest to you as seeming unenthusiastic about goals and relatively unambitious.
When I say I risk being retraumatised by a simple interaction, I don’t just mean triggered, I mean that by putting myself in “real world” situations, I am putting my physical and financial safety at risk. I may require a degree of anonymity for example, to feel safe. I am sure there will be simple adaptations that can be made to mitigate some of this if you are able to have that conversation with us early on. We need to be sure you are a safe person to have that conversation with because, until I know otherwise, I am going to judge everyone based on how society treats me and misunderstands me. On top of how that affects me personally it can also lead to people pleasing and trying to fit in which means less authenticity and honesty about limitations which will not be conducive to a good working relationship. Please let us know if you are safe to have those kinds of conversations with. Be trauma informed, this may require training. We may not all be traumatised but many of us will be and this applies to all marginalised people not just disabled people. I believe truly trauma informed practice is one way we can build a bridge between your world and ours.
Poverty – many of us are unable to work and therefore don’t have extra money to spend. Any bursaries or heavily subsidised opportunities are appreciated. Maybe consider where you promote these opportunities, I feel intimidated by engaging with writing communities for the reasons I have already discussed, so if you only promote these opportunities there you will likely miss those of us most marginalised. You could think about coming to our spaces, our online communities and support groups. Things like online support groups for disabled writers would be useful especially if trusted people from the writing industry could drop in for advice and support. It would also be a good way for you to look out for interesting writers and stories. I honestly don’t know how to address the issue of writer income and especially in relation to disability welfare. All I can say is be aware that there are complex issues and be sensitive to that.
Understand our diversity. You can help by being aware that all our realities will be different. There is huge diversity within the chronic illness and disability communities so don’t assume anything, defer to us. Some of us don’t experience as much exclusion as others. Some of us are disabled with multiple conditions which affect us in different ways. Some disabled people are more excluded than others, purely due to the type of disability they have. Some are disabled from birth and some become disabled at some point in their lives .A huge number are intersectionality marginalised. All these things and more can dramatically affect how excluded we are and also affect our perspectives and experiences. We are far from being an homogenous group.
Privilege– Be aware that currently it takes privilege to get to a place where we can even make you aware of our existence. Privilege has undoubtedly been a factor in the rare situations where I have received help, whether its access to occasional funds from family to pay for a one off Specialist appointment or by just being white, educated and well spoken. Without that I would not be in a position to be able to think about writing. I might not be alive. If you want to hear our voices, it’s important to understand how inaccessible many of us are to you.
Be aware of and alert to disability and illness tropes. These tropes are enmeshed in society and literature. They are a view of disabled reality from a non-disabled perspective but because no one hears our actual voices they are accepted as disabled peoples’ reality. Their purpose seems to be to make people more comfortable with our existence. That we have some sort of purpose within the capitalist world since they believe we cannot contribute economically. The irony is that a great many disabled people do contribute to the capitalist world and their realities are entirely erased too. They also exist to comfort people into thinking it couldn’t happen to them and if it did their strength of character would make it OK. The tropes also seem to exist as an “othering” technique, they are rarely told through our authentic voices but instead usually from the perspective of non disabled people.
I’ll describe some here so you know the kind of thing I mean. First up is the classic trope of the inspirational disabled person. We call that “inspiration porn”. The story of the tragic disabled person, the person who has achieved amazing things despite their circumstances. This reiterates the concept that it’s up to the individual to overcome their personal issues and that those disabled people who do well have done it through their own grit and work ethic. Those disabled people who don’t do well by society’s standards have the wrong attitude, haven’t tried hard enough and therefore must be OK with their lot. There is little acknowledgement that many or most of our issues are caused by society. It tells you that we could all be OK if we pushed ourselves hard enough. I bought into it myself in the earlier years of my illness. I was only aware of the tropes I had no idea about what chronic illness or disability could be outside of them. Grit and determination can be useful in certain circumstances but it can also be damaging. A quick example from my life. I was told after neurosurgery that there was very little chance I’d be able to walk properly again. At first I took that to mean there was a small chance and I would be a “bad disabled person” if I didn’t focus everything on taking that small chance. However, due to my other conditions causing me some serious issues when attempting this, my physio helped me see that the most important thing was to make the best of my life as it was. Society was telling me walking and being less visibly disabled was me making the best of my life even when I was destroying myself and unlikely to achieve it anyway. Actually embracing life with my restrictions was actually better for me. Even when you do try and live up to that inspiring disabled person trope you find out the “real world” still doesn’t accept and include you, they only want you to live up to it so they don’t have to see you as disabled anymore. It’s also patronising. Non-disabled people are so caught up in believing the reason we exist must be to encourage and inspire non-disabled people that everything we do becomes inspirational including being seen in public or doing basic hygiene tasks. It says something about how society erases disabled people that people who see us out and about existing decide we must be so brave to do that. We shouldn’t have to be heroes, we should be able to do these things easily. Instead of calling us inspirational, maybe people could make it easier for us to be included.
If you aren’t going to be inspirational then the next trope is the tragic disabled person. The worst has happened and their life is no longer worth living or they have a terminal illness so they are sacrificed by the story to teach the people in their lives how to be grateful for what they have. Firstly, ill and disabled people can live long, valuable, full lives. We don’t always die. Secondly our lives aren’t a tragedy, they are lives just like yours, just as important and valuable as yours. We don’t exist to inspire you or teach you something about yourself and your lives. We exist for us, to live our lives the best way we can. Just like you.
If you are not inspirational or tragic then the third common trope is the hypochondriac, the faker, the person who uses illness as a way to manipulate people. Based on my personal history I’m sure I don’t need to spell out how unrealistic and damaging that one is. Linked closely to that is the disabled person who is so traumatised by the unfairness and difficulty of their situation they turn bitter and evil.
I can’t recall coming across a story about a disabled or ill person that hasn’t fitted one of those tropes.
Linked to tropes is the standard story structure, the hero’s journey in its classic form is one example. Happy endings are other. Disabled people’s lives and stories often play out differently and that can cause people to misunderstand and devalue us because our lives don’t follow a story structure they understand. Normalising different story structures would be a way you can help us overcome that barrier. I think this is an issue for marginalised people in general. This is a complex one but marginalised people can’t rely on the idea of happy endings, even if they are just temporary. Often it just doesn’t work that way for us. Happy ending tropes when they involve disabled people usually involve us being able to be more accepted in your society, a magic cure maybe or the happy ending is actually for a non-disabled character who went through the trauma with the disabled person and it taught them so much. Speaking for myself, that classic story structure doesn’t fit my life. My life is more about creating magic in usual places, moving through life in unusual and unexpected ways to make life work for us, learning about ourselves and others, making internal connections, revelations, and awakenings. Finding new nuanced emotions and ways we can feel satisfied in the moment,create peace, no future happy ending, no dwelling on the past just making something of now. These are exciting and interesting ways of living but, I assume because they don’t fit the classic story structure, they don’t get told so much in relation to disabled people. If our stories aren’t told in an authentic way how can we ever be accepted and valued? We will always be feared and pitied.
If we don’t neatly fit into one of those two tropes we don’t exist for you. You have no way of understanding what our lives are really like, you either assume we do fit into one or the other or you erase us. Those tropes are not our reality, they do not represent us. They are who you want us to be, how you see us. They are our stories as you see them. but they are not who we truly are and certainly not what we have to say. Those are the stories we have to pretend to embody if we want a small chance of being accepted in your world. For all your best intentions the writing and publishing industries are in that world. It does not seem possible for me to access that or after all I have experienced, to even want to access that.
How do you manage your illness on a day to day basis?
This is tricky, because it has meant different things to me at different times and is always adapting and changing as my illnesses and disabilities do. Right now management takes up almost all my time and energy one way or another. I’ll try and explain a few overarching tools that are always important for me. I have been ill/disabled for 20 years and in that time have occupied different places on the spectrum including being able to work part time, do basic housework and have a bit of a social life to being in and out of consciousness and close to death. Currently I am generally, more stable although severely symptomatic, a full time wheelchair user, housebound and reliant on full time care.
My goal as a disabled person is to live my best possible life. Therefore, how I manage things is based on who I am and what I want at any given point. This ties into my two worlds theme. If you choose (and it is realistic for you) to aspire to get back to the real world to some degree, your life and management will be very different to someone who decides to accept themselves and their situation as they are, on the margins and then to find purpose, value and joy within that life. I have been both of those people over the past 20 years and my chronic illness management has varied a lot to fit in with that.
Currently, due to the severity and permanence of my disabilities my mindset has switched from chronic illness management to life management. My illness and disability is ever present. I can no longer temporarily put it to one side or fight to put a mask on as I used to. It is infused into my life and my being, not just a separate part. This is why I have been excluded from the “real” world. I can no longer fake it for short periods like I used to. What that means is I’ve had to create a world for myself where I am a success based on my own definition. I do the best I can at accepting and managing my symptoms, I find as much positive input as I need from whatever sources I can, I fulfil my personal goals in a way that makes sense in my world. It is not goal driven or based on anyone else’s judgement, it’s purely based on how well I am managing myself, as I am as a complete, rounded human being. To the real world I get the message that I am seen as someone to be pitied. In my world my life, experiences and achievements are just as important and valuable as anyone else’s.
Prioritising physical and mental health
Whatever position I find myself on the illness severity spectrum I have to put my physical and mental health first. This may seem like a no-brainer but in the real world we generally don’t have to make much of an effort to do that so it takes some thought, commitment and mindfulness. There are many aspects to who I am but the reality is if I don’t manage my health optimally I don’t stand any chance of being able to express any other side of me. Practically, that means planning and attending doctors appointments, managing treatments and therapies day to day, having surgeries, resting, managing symptoms, just existing with overwhelming symptoms, seeking activities and therapies that help soothe both physical and mental health symptoms, dealing with structural difficulties in my home, society or relationships as much as possible or using support groups.
My aim is some sort of stability whatever that may mean. It can mean stability at a low level of functioning and a high level of symptoms as it does for me now. The key is, my lifestyle needs to be sustainable. I don’t want the way I live my life to be a contributing factor in a worsening of my health. Before I can do that I have to make sure I do everything I can to get a handle on anything acutely life threatening or progressive that destroys all quality of life. This can involve only focusing on my health for many years for bigger issues that need dealing with. That is fine because health has to come first.
Next, I have to be realistic about my situation, for example, there is no point making three conditions worse in an attempt to improve one for example and if that’s even possible/likely. There is always a risk/reward negotiation I have to do when I consider a new treatment and intervention. I have learned sometimes it’s OK for me to refuse a treatment if I decide the chances of it triggering a different condition is too high. Again it depends on your situation but for me with multiple different, not well understood conditions. I know my overall situation best and I make the final decisions.
Being realistic can mean making sure I have time scheduled in your day or week for treatments, rest etc. Even if my brain tries to trick me into thinking I can just do the thing I want to do, it’ll be fine (it usually isn’t). What It always means is if a symptom or issue is flaring up or ringing alarm bells I aim to drop everything and get it under control (as much as is possible). I say aim as with everything perfection is far from possible, I can only do my best.
As part of my life I have to keep myself updated on all my conditions as the particular conditions I have are not well understood by most doctors. For this reason I do not have regular clinics and check ups with my doctors unless there is a specific on-going issue or treatment with one aspect of my health. No one oversees me. It is my responsibility to be my own doctor. I do the research, find specialists, decide who and when the right time is to ask to be referred (and hope my GP agrees), do my own risk reward analysis for suggested treatments. Without a specific medical team behind me obviously my choices are restricted and I have to come up with alternative solutions to manage my situation myself. This all takes a huge amount of time and energy, of which I have very little.
Energy preservation and management /Pacing
Sometimes this is the only thing I can do when I am at my worst and that is OK. At certain points of my illness I have spent weeks or months just in and out of consciousness unable to even think straight. Other times I have had more flexibility with my energy. At those times knowing what I’m saving those little moments of functionality for is important. What are my values and more importantly what am I realistically capable of? At the moment, that is writing, in the past it’s been my friends or partner, or at a different point even part time work. I can’t ever find the energy to do all the things I would like to in an ideal world so generally I pick one and devote my attention to it and try not to waste energy feeling bad about the things I can’t do. One of the cruellest parts of chronic illness for me is that my brain isn’t always in tune with my body and wants me to do things my body can’t. It also always thinks it knows best. My brain thinks that if I really want to do something or it’s positive in some way then it won’t harm me. My brain thinks that if I just push myself that bit harder I’ll overcome my physical issues. My brain thinks it is ready to do something else now and it’s powerful enough that pure drive will be enough to heal the body, or at least overcome symptoms stopping me doing what I want to do. The difficulty is, like anyone else, sometimes we do have to take a risk and push ourselves out of our comfort zone and it can pay off, unfortunately, in my twenty years more often than not, it has caused long term harm. That doesn’t always stop me but I have had to learn how to manage this issue.
Whatever I try, whether it’s treatments, therapies or new aspects to my day, I have to start really low to counteract the unrealistic beliefs of my brain. It’s tough, once I have found something you want to do whether it is chatting with family, sitting outside, watching tv, reading or trying to bring something in like writing- you just want to do it as much as you want. My body doesn’t like that and it will let me know!
Pacing as a technique to manage chronic illness is something that’s talked about a lot and there are many ways to approach it. It can seem quite rigid about the right and wrong way to do it. I’m sure there is absolutely an optimal way but that rarely fits in with people’s lives or the way they want to live them. It took me many years of attempting to do pacing in the right way, switching between short bursts of mental and physical activity with short rest breaks in between. Maybe for some people that yields good results but it makes me miserable. My neurology isn’t wired that way. I can’t keep switching from one state to another that often. Instead of that I tend to, if I’m well enough, do any mental or emotional activities in the morning, and rest in the afternoon and evening. Alarms can be useful if I’m doing something I might get hyper-focussed and lose track of time.
I am unable to do much in the way of physical activity but things like physio stretches I do just before I start my rest session in the afternoon. I also do the two sessions in different places in the house in order to help me switch modes (something I find very difficult). The routine aspect of it is good. It makes activity predictable and stable which can help stabilise energy to an extent. I’ve learnt as long as I am gentle about how I approach my routine it works ok. Gentle means not being rigid about sticking to it if things crop up but also setting limits on how much time I can spend on something. It’s hard when you have had to be a driven person for most of your life to switch to gentle mode but after 20 years I see how important it is. Like many disabled and other marginalised people l have experienced being a failure in the “real” world and been judged for being lazy and “not trying hard enough” that I instinctively want to prove myself. In my world I have to remind myself I don’t have to do that, I just need to be the best version of me, as I am, and being gentle with myself achieves that. This is my approach to writing. It can be difficult when my brain is full of ideas and wants to get them out despite how terrible I feel or how much pain you are in. However if I do that l find I then go months not being able to do anything positive while I recover and then it’s also much harder to get back into it. The thing I enjoy becomes a threat, something that makes me more ill. Sustainable practice even if it’s much less than I’d like means I can have that positive energy in my life more consistently.
Another aspect of energy management is finding ways to do things I have to or want to do and thinking of ways to do them in a more energy efficient way. Some examples are:
Doing them less often-For example I only shower once a week. Showering is one of the most exhausting things I can do. The real world tells us showering daily is a fundamental necessity but in my world, it isn’t. My health is the most important thing and although there are pros and cons, ultimately my health is made worse by showering more than once a week. I would rather use that energy on something I love (writing) than on something I feel I have to do but gives me little benefit (showering more often)
Delegating -I am lucky I have had carers to fall back on when I’ve been at my worst, delegating is hugely important especially if it’s a task that I could do in theory but would take all my energy and cause me harm, for example online grocery shopping which someone else could do without too much effort.
Changing the way I do things- doing things in stages rather than all at once, using aids/adaptations (braces, recliner chairs, special crockery and cutlery, pillows, shower chair and wet room are some examples), using email instead of phone, dictating into phone rather than typing, getting lost in imagination, using social media or watching TV instead of reading for inspiration
Letting go of some things- Some habits, beliefs, goals, people or commitments we hold on to out of habit or a sense of responsibility. It can be scary to let go but at certain points for me it’s been vital to preserve what tiny amount of energy I have. Sometimes there are things I cannot change and part of the work is accepting that reality even if it means I can’t do what I truly want to. The reality is the reality and the trick is to find value and esteem in whatever I can or can’t do. This can take a lifetime but for me it has been an important focus.
I had to unlearn being a worker even though this is ingrained in me from childhood as someone from the working class. In the earlier stages of illness my ultimate goal was to get back into the old world to some degree, to live up to those expectations, work hard, get better and have goals that will allow me to fit back into society. It has taken time and even at times, encouragement from medical professionals to truly live in my world. I’ve had to make hard choices such as whether or not to try and walk again. I was told that it was unlikely that I could learn to walk again after I had neurosurgery so I felt that because I hadn’t been told it was impossible I should put all my energy into trying to achieve that goal. The reality was, due to my other medical conditions being so severe, I could not do even close to the amount of physiotherapy needed to stand a chance of meeting that goal. I was still determined though and my physiotherapist had to gently tell me I could waste my time, energy and probably destroy my health even further on doing that or I could divert my energy into my world and create a nice a life as I could for myself as a wheelchair user. It made perfect sense but the “real” world energy was strong and you are supposed to fight to do the “right thing” which is to be as close to normal and acceptable as you can be, no matter the cost to you. My way won’t be everyone’s way, some people have to be in the real world and people can choose to be.
Boundaries- I have a history of trauma so boundaries have always been tricky for me but healthy boundaries have turned out to be important. It’s so easy to go along with what others want especially when we don’t feel safe in our bodies and situations. Being long term ill and disabled is also steeped in a lot of shame sadly and that can encourage us to do things we don’t feel comfortable with because we don’t want to feel shamed. Boundaries at different points in my illness have been things like
- how often I can do certain activities
- what I can or can’t do socially
- what time of day I can do things
- reserving the right to change the boundary at any time if my condition changes even on a day to day basis.
- How I want to communicate
- how often or how many people I can see
- whether I accept hugs or kisses
- whether I see people who are unmasked or unvaccinated.
My symptoms are wide ranging and severe, management happens in multiple ways, (preventative, routine, acute and urgent). Some of the things I do on a daily basis are; liaising with my partner who is also my full time carer to discuss what I need that day
managing supplements, medications and other treatments
resting a lot
tracking my health to ensure I am doing the right things taking care of my mental health.
Sometimes there are tricky situations to manage, for example writing can sometimes help with mental health issues however it has to be the right kind of writing and I have to be aware of the negative impact it might have on my physical health. Often with chronic illness there is never one good solution to helping symptoms, there are always pay offs and a big part of my life is assessing and managing which of my symptoms to help potentially at the expense of other symptoms. Perfectionism is the enemy of symptom management. You just have to do the best you can and I’ve had to learn not to think in binaries, ill and well. Because I have multiple conditions the “ideal” is usually somewhere in the middle because treating one condition can make another worse and some conditions are more receptive to treatment than others
This is a really useful tool as it keeps track of how well I’m managing myself and what changes might have helped or hindered me. If I’m going downhill I can see what might have caused it but balancing the time/energy spent tracking with its benefits can be tricky. Sometimes tracking can be asking a family member to tell you if they think you’re doing better or worse. It can be using a smartwatch or just tracking in a diary any interventions/changes and how you felt once a week. I do a combination of these and have a spreadsheet I update weekly with an overall score of how well I am as a bar chart and then notes about things I did or treatments adjusted within each bar. That way it’s easy to spot long term trends.
Dealing with agencies/doctors
I could say a lot about this but all I’ll say is dealing with benefits agencies, social care, wheelchair services, the medical profession has been difficult and physically and mentally destructive. I have seen amazing people in all these areas who have been good people who have helped me enormously but that is not the norm. I don’t need or want to go into details here. If you know, you know. If you don’t it’s another one of those two worlds things. What people perceive of these entities from the outside is not what we generally experience on the inside, especially, as with everything, for those who are intersectionality marginalised Sometimes you cannot avoid dealing with these agencies because your survival depends on it. I have learned to accept that when these things need to be dealt with I may not be able to do anything else in my life and my conditions may deteriorate. It’s not right but it’s the reality. In these situations I put all my focus onto dealing with them and employ all the self care techniques I have.
Because physically and mentally engaging with these agencies has caused me serious physical and mental harm multiple times in the past, I sometimes make the choice not to seek help because the cost of the process of dealing with them is too high. This goes back to the risk/reward analysis I spoke about earlier.
One of the most important lessons I learned through these 20 years and the first thing I say to anyone at the beginning of their journey is, get your medical records and test results and if you can, learn how to interpret them properly. If I had done this in the first few years of my illness I would have picked up on things that would have dramatically changed the course of my life. I cannot overstate how important this is. I know this can be tricky for some because you do have to be unemotional about how you interpret them and understand which out of range tests are meaningful and which aren’t. I am lucky that this is something I am good at. I think in most situations though, this is a good management technique.
It was important for me to understand the limitations and biases of my health care system (the NHS). I didn’t understand this when I was first ill and put my faith in it wholeheartedly. For me, it works better when I understand the ways it can help and the ways it can cause harm and negotiate it accordingly. It would be nice to think that I could just let them look after me but I’ve learned from bitter experience that it just doesn’t work that way. I pick your battles, I understand the situations where I am safer to trust the medical professional and I also understand where their weaknesses and biases lie and do my best to avoid those situations. The power structures within the medical profession always place the patient at the bottom. There is not much I can do about that but being aware of it is important. There are many situations where, due to my own research I have more understanding about something than my doctor. I have had doctors pretend to know better than me and tell me things that are dangerously inaccurate just because they didn’t like me knowing more than them. Bringing research papers or referring them to their own guidelines can be useful. When I know I am right about something and it’s vital to my health I will insist they look it up in front of me. When they realise I am right they back down. It shouldn’t be this way but knowing it can only be beneficial for patients. This is not meant to be taken as advice, this is just how it works best for me.
Peer to peer support
This has been life changing in how I manage my illness, particularly online groups. I’ve been careful about the groups I choose to be part of and am discerning about how I interpret other patient experiences but honestly, these groups are invaluable in showing the reality of what it’s like living with a condition, you can’t get that kind of information from a doctor or a research paper. I use the information I get from these communities alongside peer reviewed research, my own experiences and information from specialist doctors.
At times it has also been a way I feel like I am giving something back. If I can use what I’ve been through to help others in some way it feels good.
I love the concept of synchronicity and on my twitter account in the last few days I’ve seen threads from the chronic illness and writing communities talking about some of the things I’ve been talking about here. That gives me hope that it’s not just me, that maybe we can shine a light on some of these issues. It’s given me the courage to speak my truth even if it seems negative. I have no positive quick and easy solutions. The truth is there are none and it’s nice to acknowledge that not being able to find them doesn’t make me a failure.
* There are differing views in the disability and chronic illness community about whether those terms are directly interchangeable but for me there is a nuanced difference. It is possible for someone to consider themselves disabled without being ill, also you could have a chronic illness and not feel disabled by it. For me personally the word disabled covers both my disabilities and my illnesses so I tend to use that term to cover everything.