#having both at least for me i thought cfs was just the chronic tiredness and pem crashes but ppl w only cfs can have very fibro sounding

[tele-mesmerism]

when i got my diagnoses the cfs dx felt so secondary and less of a big deal than fibro but i wish theyd put emphasis on how much you can destroy your body permanently. but ofc they wouldnt have said that bc they were still teaching GET at the time, they were recommending treatment that wouldve damaged my body so much

[cassolotl]

Self-diagnosis in relation to doctors, Tumblr, and the disability community generally

In which I continue to be baffled by people who are against self-diagnosis, complete with descent into a frustrated “get over yourself” rant at the end.

~

So a few weeks back I wrote a thing about doctors failing a lot of autistic people, and celebrating that autistic people are diagnosing themselves and finding community.

I’d like to add that getting formally diagnosed was really helpful to me, on a personal level and also on a practical one - having a bit of paper from a doctor saying I’m autistic has allowed me to have access to various services much more easily, and it’s also taken away any doubt that I am autistic and I do experience various legitimate difficulties as a result of that. It’s helped me to accept myself, and even though it shouldn’t it has helped other people accept me as I am too.

So yeah, I am accepting of people who self-diagnose but alongside that I do also encourage people to get formally diagnosed if they think it might help them. It’s not like you can’t accept and appreciate both methods of self-discovery, you know?

But the reason I’m here is to talk about the reality of seeking diagnosis and how that fits with self-diagnosis.

~

My story starts sometime last year. I’d been unable to work for about 10 years due to, basically, tiredness - since I was 20-21ish. (So by the time I started to feel my life was severely negatively impacted by this condition I was probably older than most people who get hassle for self-diagnosing on Tumblr, right?) I couldn’t keep a job or even volunteer work because I kept calling in sick for tiredness. In the end I gave up. The GP tested my blood and told me that I wasn’t anaemic and didn’t have a thyroid condition, so they slapped on me the label of chronic fatigue syndrome (CFS). There was no known cause or cure, and the treatment was graded exercise and CBT. She told me that with no other symptoms it’s considered by the NHS a psychological condition, and I supposed at the time that that meant it was psychosomatic, or like being unable to get out of bed due to depression. I was in my early 20s and not very familiar with the medical system, and I had no idea was autistic, and I just accepted the diagnosis. I was never really satisfied, because it felt like a cop-out, but I accepted it as best I could and moved on. I know now that CFS is usually not a condition on its own but probably a symptom with an underlying cause.

Fast-forward a few years, and I’d been diagnosed with autism and after some fighting the system I was getting support in my day-to-day life. I was around people who loved and accepted me, and I was getting therapy that was helping with, among other things, my autistic difficulties.

One day I noticed that my lower left leg felt weird. It was lighter and it felt kind of nice actually. It took me a few minutes to work out that this weird feeling was the feeling of a healthy, pain-free muscle. It felt weird, in other words, because it didn’t hurt. I had forgotten the feeling of no pain in my lower left leg. But the entire rest of my body felt this other thing - heavy, tired, unpleasant. You know, like normal, the way it feels every day from when I wake up in the morning to when I go to sleep at night. The thing that gets worse every time I walk around or up and down the stairs. I was so accustomed to pain that I thought pain was normal and how everyone felt, and a lack of pain wasn’t just a shock, it was difficult to recognise.

I realised that maybe my tendency to feel less tired and sleepy after taking painkillers might be a bit weird. I thought I was having a strange reaction to painkillers, in a caffeine way somehow, and I felt I shouldn’t take painkillers if I’m not in pain because that would be an unhealthy dependency.

But what if...

Everything is different when you’re autistic. I came to terms with the idea that my entire body is in pain all the time, and my brain has just stopped processing it as such. Even when I am paying attention and listening to my body and really feeling everything as best I can, I can detect no pain whatsoever. When it gets bad I feel like I have to go to bed and maybe nap, but when I get to bed I can’t sleep - and it’s because I’m not sleepy. I’m in pain, and I feel better for lying down in a nice comfortable bed in a safe place. And when I take painkillers, I magically feel better again.

Going to the GP about this wasn’t going to work. It could be anything. All-over pain could be a neurological problem, it could be cancer, it could be anything. I knew from experience that going to the GP with no other information wouldn’t work, because the fact that I hadn’t even been feeling the daily full-body pain I was in meant that unexpected diagnostic questions would confuse me and I would probably answer “I don’t think I have that” to everything. Yay autistic masking! \o/ She would say, as GPs have been saying to me for a long time, something like “I can write you a sick note and diagnose you with chronic pain but unless we have more symptoms to go on I can’t refer you to a specialist.”

However, for a while now I had been somehow connecting with people who had EDS. I followed people on Twitter who had it and even though I didn’t on a conscious level realise that we had things in common because they had pain and I thought I didn’t, I felt a kinship. I remembered the kinship I felt with autistic people before I realised I might be autistic too, and I made the connection.

For several months I self-diagnosed with Ehlers-Danlos Syndrome (EDS). It’s a rare genetic condition that affects your collagen, which in some people is very serious. Wikipedia told me that the classical type is experienced by 1 in 20,000-50,000 people. Surely it is really weird to leap to the conclusion, out of the blue, that I have this one very specific and rare condition? It seems so improbable. But when I looked at people with EDS, their lives were so much like mine. Their coping mechanisms and management strategies that they’d come up with deliberately to deal with their EDS were so similar to the stuff I was doing by accident just to get from day to day. If I had the same symptoms and therefore the same diagnosis it would explain everything that isn’t covered by autism and being trans.

So I went into research mode. It took months. That’s how it is when you’re autistic, alexithymic, and are very bad at self-reporting. The Beighton Score part was easy because they’re bodily tests you can do yourself at home with clear results - but for the rest, sufferers of chronic illness will remember the feeling of discovery that goes, “wow, I thought everyone had that?” It was much more difficult than that for me. For every symptom, I had to fight through layers of “but I don’t have that” and “okay maybe I have that but surely not more than most people” and “but if I had this surely my mum would have done something about it when I was a kid” and “I have this but I don’t dislike it so surely that can’t be a symptom.” Because when you’re alexithymic, sometimes you kinda lack the feeling that is like, this is unpleasant, I’d rather this was better, and actually maybe that’s possible. Sometimes things that cause other people great discomfort don’t even register to you as unpleasant. Yay alexithymia.

I had to trick myself into acknowledging my symptoms. I had to compare myself to other people in a way that wasn’t dismissing my own experience, which was a very new thing for me. “I experience this, yes, but have I ever actually heard anyone else complaining about experiencing it themselves? If not, it is probably safe to assume that my experience is unusual and causing me problems, therefore relevant to a doctor.”

I had a Google Document bookmarked in my browser, with headings for each symptom of EDS. I mulled the symptoms over in the back of my head for a long time, writing down symptoms as I became sure of them. Such is my symptom-normalisation that it took months to add these to my list:

Joints dislocating (or partially dislocating) without trauma such as a fall on a regular basis;

Dizziness and passing out from movement or exercise that shouldn’t normally cause dizziness and passing out;

Stomach aches pretty much every day.

During this process, the company who provide my support decided that my care plans didn’t fit their company policy of involving the service user in their care as much as possible. They rewrote my care plans to include constant references to me doing at least part of every activity, with a view to me eventually becoming self-sufficient and no longer needing their care. I explained to them that I was discovering that I had EDS, and could they acknowledge that sometimes I just need people to do things for me so that I had more energy to be independent on my own later. They refused. They said that they would not provide support for EDS until I was diagnosed. They said, in fakey neurotypical language, that they didn’t think I had EDS. They ended our contract over it, a couple of weeks before I was due to attend my rheumatology appointment, and all of this while constantly saying that their service was person-centred. Not that I’m bitter.

A lot of people would doubt their self-diagnosis and stop trying to see a specialist at this point. But I went through similar stuff when I worked out I was autistic and people with power over me didn’t believe me, so I kept going anyway. If I saw a specialist and they told me I didn’t have EDS, at least I’d know.

I started to say openly online that I had EDS. People with EDS accepted me immediately, completely, and without question. But I knew that there were people out there who would tell me that they wouldn’t take me seriously until I was formally diagnosed, and would assume (since I blog on Tumblr) that I was just doing it to get disability points or whatever. “They say they’re nonbinary, autistic, asexual, aromantic, and now they’ve decided they have a rare genetic condition. Yeah, right. I guess their oppression points aren’t getting them enough attention. What a special snowflake.” For serious, the frequency with which I am assumed to be a teenage girl will not be at all surprising to a lot of people reading this. My reluctance to disclose my age and gender online gets me accused of teenage girlhood by TERFs and Tumblr-haters all around, especially if they know I’m on Tumblr. In reality I’m 30, mostly post-transition as openly nonbinary with the kind assistance of the NHS, and formally diagnosed with everything I say online that I have. (I do have some things that I’m not formally diagnosed with, and those are MH things that I don’t trust the NHS with for many legit reasons and I don’t talk about them online much.)

I learned that the type of specialist professional who can diagnose me is a rheumatologist. Eventually I made an appointment with my GP and printed out my symptom list document for her. It began, “if you’re reading this I think you can help me get diagnosed with and treated for Ehlers-Danlos Syndrome.” For each symptom I described the severity and how often I experience it. From my 10+ years of GP dismissal for bad periods that turned out to be endometriosis requiring a hysterectomy, I remembered the magic words: “I’d like a referral to a [specialist] please.”

My GP happily referred me to a rheumatologist at my request, and I was on their waiting list for a few months. When I eventually arrived my document of symptoms was even longer; I’d managed to clarify a few more while I was on the waiting list.

I have told you this story to show you how long I prepared for my diagnosis appointment, how much effort I put into diagnosing myself and how much I had to know to even see a specialist who could diagnose me - and to emphasise how anticlimactic getting a diagnosis actually is.

The rheumatologist was very kind. He read through my document, which took a few minutes. And then he said to me, in neurotypical language so I’m hugely paraphrasing and he did not sound this rude in real life:

“I don’t know why you’re here. You know you have EDS, you don’t need me to confirm it. You know there’s not much I can do to treat you, and you’ve had it all your life so at 30 years old you have come to terms with the symptoms and you have lots of coping mechanisms and self-management techniques.”

He was kind and listened to my concerns. Here they are in bold, along with the rheumatologist’s response.

I’m not a doctor, I can’t ever be really sure, I wanted to talk to a doctor to confirm it because maybe I have something else kinda similar or I’m just wrong. “You have most of the symptoms, and you’re well-informed. You seem to be a pretty clear case to me. What can I do to help?”

Perhaps there are treatments or services that you can help me access? “It’s mostly a case of managing it all yourself at home on your own. Try to go out for a walk every day, and don’t rely on your knee braces because your knees need to get strong enough to support themselves and knee braces won’t help with that. But you will probably always experience this cycle of crashing and having to build up your strength again very very slowly. No one else can really help you with that.”

I’d like a bit of paper to show to people who want proof of my EDS, like the DWP (who provide income for disabled people in the UK) and support companies. “The DWP don’t care about bits of paper. They ask you to do a series of exercises like lifting your arms and moving your head around.”

This last one was difficult to hear, because the DWP would indeed declare me fit for work based on their usual tests, and the only thing that gets me out of that situation is letters from medical specialists describing my symptoms. Me describing my own symptoms is not proof enough. To put it another way, me saying “I experience daily pain all over my body” is not proof to the DWP, but a doctor saying “Cassian tells me they experience daily pain all over their body” is totally strong evidence.

The fact is that the support company who ditched me should not have needed a piece of paper saying I have EDS to provide me with support that suits my needs. They were happily providing me with support for autistic difficulties despite never having seen a diagnosis letter. They should have listened to me stating my needs, and then written care plans that suit those needs. But like the DWP, a piece of paper from a doctor saying “Cassian has these symptoms” carries more weight than me saying “I have these symptoms.” It’s kinda twisted, and my diagnosing doctor didn’t know it, but that’s how it is.

So basically, this is all to tell you that people on the internet totally trash self-diagnosed people on the internet, and say “I’m not gonna believe you unless you get a formal diagnosis, you’re making people who really have these conditions look bad, please stop” - but when you actually do get to see a doctor they have no problem whatsoever with self-diagnosis and they don’t understand why anyone would seek diagnosis for a condition that they already know they have. Doctors, they know, are for working out what’s wrong with you. If you already know the name of your condition, you don’t need to talk to them. If you are successfully self-managing and don’t need treatment, you don’t need to talk to them. And as far as they are concerned, you shouldn’t need to have a diagnosis letter to have your needs recognised and respected by companies and local authorities when seeking support.

“But Cassian,” some people will say, “you are quite a special case. You’re older and more experienced than most self-dxers on Tumblr, you did a lot of research for a long time, you did everything right. It’s a spectrum, you know? Your self-diagnosis was valid, but there’s a lot of blatant fakers out there on Tumblr.” NO SHUT UP. You cannot judge people on the internet like that! You know nothing about them and their life! And even if you feel doubtful of their self-diagnosis because of the way they talk about it or whatever else superficial reason, that doesn’t mean that they are making it up! You deciding that I am legit and they are not is PURE PREJUDICE and you can take your backhanded compliments elsewhere!

So like, let’s just go over that in very clear words so you know where I stand. I understand that diagnosis and disability and mental illness are complex and nuanced issues, BUT. Self-diagnosis doesn’t magically become invalid just because you say it does, and holy crap even if teenagers on Tumblr were giving everyone else a bad name no one would know because doctors and the DWP and local authorities and anyone who has any power over us at all DON’T H*CKING USE TUMBLR and have no idea that you think teenagers are making it up for attention. All of this tug of war between “self-diagnosis is valid (✿◡‿◡)~” and “self-dxers are attention-seeking Tumblrinas that give legit sufferers a bad name” happens in a little internet bubble that the VAST MAJORITY of people are blissfully unaware of, Jeeeesus Christ on a bicycle.

Okay, thanks for listening, I’m glad to get that out of my system.

~

[Also posted to Medium.]