This post follows on from my last (link here) and continues the themes about battling for a diagnosis, medical gaslighting concerning to ME, long-covid and related neurological conditions. However this post focuses more on the fragility of hope and what battling the medical industrial complex means as a feminist and crip work. It is about a 6 minute read.
…hope is a dangerous, potentially foolish space to be.
There is a vulnerable place when a diagnosis gives way, especially when there is nothing firm yet if ever. A new diagnosis may simply emerge as a question of narrative weight, not as a result from an elusive test. Nothing to point to other than a narrative told and understood a certain way. As well as a narrative that, with new knowledge, can not be imagined another way. And I think I will upset my friends with long-covid, ME/CFS, Fibromyalgia and all other conditions for which there is not a definitive test yet developed for why we feel so sick. This would not be because of jumping diagnostic ships I hope, but because we have all occupied this space – the space of desiring, wishing for, and demanding more tests to try and prove you have almost anything else that has an answer and knowledge about. It is a space of hope, a space you have to learn to give up as the process of accepting and coming to terms with the body, brain and mind that you are. A gloriously crip body, brain and mind with a chronic condition for which there is no cure and little treatment. We live and love life with chronic fatigue and chronic pain.
I know hope is a dangerous, potentially foolish space to be. I have been here many times. You don’t enter this space again unless there is something so strongly telling you there is a very good percentage chance you are right. Unless your new belief overcomes the self-doubt that has settled and grown through sustained medical gaslighting. The self-doubt that comes from, what I should call by its proper name, medical trauma. To allow hope in means there must be enough chance of an answer to go back to the battle when you can’t stand it anymore. To carry on seeking answers, finding a way through the medical system, a system saturate in a culture that permisses disbelief and dismissal for people with conditions caught in the legacy of hysteria – a legacy that has denied knowledge, understanding and care for diseases and conditions caught in its throws. I sound alarmist in this paragraph, that I am over egging the drama. I am, potentially, but that would be medical trauma speaking – the desire not to continue with this battle, to not risk further gaslighting, further dismissal, further being told it is all in your head. I know they are many people who know exactly what I mean, and how this feels. With long-covid there has been so much more gaslighting. With ME before it has already been for most of my adult life, as it is for others. I want it to stop but, hope means I haven’t reached the end. Hope arrived and I’m not sure I wished for it, not sure that I want, but instead to get on with the terms of the body, brain and mind that I have. And yet hope can’t be ignored. Hope is not looking for a cure, but looking for answers and to find a narrative that will finally stay still. No more holding two or more narratives about the shape of your life and history of you body, brain and mind, at the same time. No more living a schism.
Hope is not looking for a cure, but looking for answers and to find a narrative that will finally stay still.
To write about this publicly like I am, to speak about these things from a place where I don’t have a solid diagnostic wingman to hang onto in a text. No definitive thing next to me that would ground and that I know a reader would understand, is, I think, like writing naked. I could have waited, perhaps fruitlessly. I am due at addenbrookes in not so long, and I may or may not get closer to being clothed. I could also not speak at all about this diagnosis process, and instead tell you how my body, brain and mind is, how it feels, my embodied knowledge that needs no diagnostic confirmation, least of all that imparted from the medical industrial complex, to be and feel in the way that it is. But then I would be missing the point that I wanted to make. To not know, to be pushed and pulled in different directions about how to understand you own body, brain and mind, to be gaslit and believe it for a good while, tricked into thinking you are feeling something else other than you are, to battle on for answers with fragile hope, is what long-covid and many other conditions feel like. This is how these conditions feel. This is what these diseases are in a large way. This is what people are living, and this is what people need to know so we can both take care and make change. These are socio-medical conditions. They are in part in surging and causing destruction in our biology, and in part constructed, rendered in the way that they feel, by the culture of the medical industrial complex. All those who have been sold medical gaslighting and bought it wholesale, know the power that the authority of medical science has in shaping how we feel, shaping our embodied knowledge. The problem is culture. This first needs to be undone, and a culture re-claimed, and then new knowledge welcomed as it emerges into the world. This is the work long-covid and its prominence I hope is helping to change.
What do I feel? Why am I sick? How to understand my own embodied experiences? How to take care? How to feel better? How to avoid triggers? How to come to terms? I am not searching for a cure, I am searching for the knowledge that will help me and others better live as we are. I want knowledge, I want to know. To battle for a diagnosis – to yearn for a diagnosis, to desire its validation, to long for one’s body, brain and mind to be classified and determined by the authority of medical science, to want to know your own body, brain and mind through the medical industrial complex’s invidious, iniquitous classificatory system, a system steeped in colonial, racist, ableist, classist, gendered knowledges – would not be easily viewed as a feminist and crip desire, and less still work for this cause. But it is.
This is the dirty, nitty-gritty, daily, ongoing battle for change. To my crip and sick friends with hard to diagnose or medically unexplained conditions, conditions with not enough knowledge or treatment like long-covid, ME/CFS, Fibromyalgia et al., friends who spend so much of their time researching and schooling themselves in medical science to understand the condition they live, teaching the doctors as they go, this is the battle to pull back the arm of the medical industrial complex and force it to see the knowledge it overlooked, force it to see it’s culture and system founded in prejudice, disbelief and discrimination, little by little. This battle takes place at a granula scale. To force it not to dismiss, not to gaslight and not to leave without care women, people of colour, fat people, poor people, trans and gender non-conforming people, disabled people and people with conditions for which the historical and systemic denial of knowledge has caused there to be no conclusive test. To force it to address its culture of tying believability to how close the patient is to a cis, white, middle class, educated, slim, able-bodied, not-yet-old, heterosexual male. Don’t go quietly. Take space and demand to be seen.
Discharged to nowhere again. Hope is cruel.
I wrote the above a week or more ago. It was part of my last blog post, but it was too long so I split it in two. I intended the above to be the last sentences. To bring this to a more positive place, or important at least. Something happened in the meanwhile that makes me feel naive for letting hope, such a dangerous thing, in. Instead of getting somewhere speaking to a specialist about a possible mechanical problem in my neck called CCI, I was discharged to nowhere once again before any appointment came. I received this news second hand from the telephone GP, in ways that made little sense. The notes offered, deciphered over the breaking line, mention nothing of CCI, the reason for my referral. I think this specialist was not informed of my symptoms and history, or chose to ignore a complexity so as efficiently expunge a number from a waiting-list sheet. Either way they chose to discharge to nowhere, without even hearing the questions raised. All questions are still unanswered.
Hope is cruel. People new to these battles through long-covid are quickly finding this out. This, something so long know with ME/CFS, Fibromyalgia, chronic lyme, endometriosis, etc and et al. To pursue hope again means starting all over, and I need to take a break from that. Also a break from writing it. Seeking answers in the face of continual medical trauma requires stoic strength, and for the moment I have not. Hope, more fragile as it has become, is temporarily shelved. Here is some radical honesty, please keep it safe.