Dear Medical Establishment
A Letter From Your Disabled Patient
The last note I uploaded on this newsletter had a lot more engagement that I anticipated - enough so friends very specifically got in touch to say, for some reason, it resonated with them. That was unusual - so I wanted to share a part ‘two’. This was a second thought the same week of that particular ‘eruption’, owing to access barriers in medical settings because of ingrained sexism.
Dear Medical Establishment,
I know you’ll be thinking, ‘great - another letter!’ This is not another letter to make the case for new drugs or treatments, or to lambast or cause deliberate upset.
outlined how such an approach would be problematic in a recent piece - because that is an echo chamber. And besides, we already sort of know the score, in a way.
I’m a Long Covid patient with a litany of extra issues, as a result of patchy measures taken by a government more interested in its glitzy, gaudy parties - I’d stayed home, not gone to socialise, not gone out to ‘play’. It was a half hour gap of a delayed test, not an indulgence on my part. Yet, we continue to shame people like me - to apparently ‘do better’, ‘get back to work already!’ - when we are already doing the best we can. This is likely to be ‘it’ for now. ‘Get better soon!’ remains fundamentally galling.
Would it really matter to just have some empathy? Or to listen, and be curious with compassion? And own up to mistakes or to take ownership of new research that corrects the old?
It’s been nearly three years; I have improved because of a kindness to myself that enforced rest, not because of any help from the medical establishment. But ‘recovery’ in full is incredibly unlikely. I am not the same person any more - I am no longer bouncy, or particularly socially confident. ‘Hobbies’ remain elusive, in favour of rest as a necessity. Socially, the world has seemingly moved on, to a post-Covid world. We’ve been left behind.
At every stage I have diagnosed myself correctly, using the basic NHS website - and at every stage, every single expert has played ‘catch up’. Because as a patient, ostensibly ‘Doctor Google’ should not be trusted - you wouldn’t want to frighten me, and worry my pretty little head! I first came in to say I think I have POTS, potentially Dysautonomia, thanks to the never ending dizziness post infection that was causing pain, blackouts, odd fainting spells and significant fatigue warranting bed stays. Running feels like I am going to die, walking too fast for too long a distance feels the same, and my spacial awareness is pretty damn awful, and I often can’t see due to double vision. Most functional activities I have had to relearn. It is not normal to be collapsing or falling over on an almost daily basis. Imagine my surprise to be told this is a likely diagnosis, two years on - despite the insistence that the latter term is just an umbrella term, and is likely too hard to diagnose.
I miss running around the woods outside my family home with my dog; that felt so unbelievably liberating during the lockdown, it meant being centred in nature. I am not ‘crazy’, and yet this has caused my own diagnosis of significant anxiety - the having to bet on myself continually with research, while not being listened to from the get-go. I feel heart sick coming into any medical setting, I always look for an escape exit now. I may be slower when moving now - but dammit, I’ll be straight out the gate on this one otherwise.
Covid 19 is not an excuse, in playing the same lockdown answering phones, still having signs posted from 2020. Arguably, we are all tired by the mind-bending event that was a pandemic. But holding such power - in making decisions and diagnosing, protecting a population - means a heirachy is in place. That is a privilege that ought never to be forgotten. It is not a legitimation or a mitigation.
I want you to presume my competence. It’s the law.
Every time you call me ‘sweetheart’, ‘sweetie’ or ‘darling’, you degrade me.
At 23, 24, and 25, I was/am not a child.
If I ask questions about my care - which is my right to do - I deserve answers in a format that are accessible to me, and not to be fobbed off. It’s also not okay to grill me as to how I would fund a private assessment - because ostensibly “this is expensive”, the patronising assumption being that I do not work because I am disabled. It is not okay to give half of the information either because ‘we didn’t want to upset you.’
I have a chaperone in the room to ensure standards of care - because I have been the subject of too many horrible experiences and unneeded testing, along with sometimes creepy comments. You should communicate with me, not them. I am your patient, not them. Oddly, I can in fact understand you! I just need a little time - maybe six seconds extra - to process what is said. Because that’s part of my Covid diagnosis’ - in needing just a bit more time. I decide my treatment, not anyone else. We still wonder, for instance, why some conditions impact disabled people more. It is in the access to care! Just look at the work of Dr Sara Ryan and the access to care around learning disabilities, such as when it comes to learning disability and impacted bowels. We should be ashamed as a society to not be doing better, rather than paying the pitiful lip service to ‘reform’ a culture based on toxicity and indifference.
I am not your education. I am in these settings for treatment - not to talk about Autism. That is so unbelievably inappropriate an expectation, and is in no way even connected to my Long Covid care - PCOS, POTS, whatever. That is beyond invasive as a demand.
Trust from a patient is a privilege. We are told often ‘don’t waste the time with cancelled appointments!’ or ‘Why don’t you turn up - you shouldn't be embarrassed?’ Why would I trust any setting, in that I know I will not be understood, and trying to seek redress is fruitless? All I would like is just ‘sorry’ if something goes wrong. Not ‘we hope you are being offered CBT therapy’. I want to be seen, and to be understood, to receive basic standards of care. Not subject to the same thing yet again, time after time. I want my privacy to be respected; I’d trust a lot more that way. It’s inappropriate to broadcast my medical results when a door is open - I could hear the details down the hallway for instance. That was just standard at most appointments. Why bother me to ask for feedback, to brush any constructive criticism off arrogantly?
It is the law to follow reasonable adjustments, as dictated by the Equality Act. Why is it so hard to ensure this is followed? I can’t do phone calls, I am Autistic, and this is in my very own diagnostic criteria. There is significant distress caused otherwise. I’ve now had to outsource the management of appointments to a designated advocate; only one institution has bothered to follow this through. This is the law, it is in place for a reason.
Please, just believe us when we say we are in pain. I think often of ME and a very public inquest - and the lack of empathy paid in kind, when a twenty seven year old woman had died. A cultural indifference was just an obstruction, par for the course it seems. This piece notes that woman was “exceptional” - yet disabled folks do not have to be exceptional in order to live. Please, just take a moment to read. This has got to be a turning point. Pain matters. We all know about the gender pain gap, for instance. Culture changes are crucial, but they have to be meaningful.
I am tired of being told I am seemingly throwing a tantrum, or that any doctor will not look at my medical records - or that, seemingly, I am not telling the truth about the impact of Covid 19 on my life, or that I have somehow been ‘lying’ about being disabled. I would never wish this on anyone. No, I can’t ‘just walk’ without my cane, I can’t ‘just try’ to not be Autistic, I can’t ‘just sleep off’ my fatigue as it is a chronic issue. I should not have to provide the research to be assessed.
I have had to make peace with it, but the access issues have caused so much distress. Please, just take some accountability - listen to your patients, and stop with ‘that’s not real’ as the first line of thought. Fuddy-duddy wording won’t brush over the lack of care either.