“Ooh I’ve never seen that before…” – the trouble with being medically atypical 

I have had a number of doctors over the years say this to me – ‘I’ve never seen that before’ or ‘that is unusual’. I am one of many Neurodivergent people to experience atypical medical issues. For me the main one is psychiatric illness. After 27 years of accessing services I finally have (most of) the psychiatrists and mental health workers  I encounter think I have schizophrenia and am autistic. This was not easy and it has resulted in me being terrified of accessing mental health services from new clinicians – such as when going to hospital – because in the past my diagnoses have been, well kind of fraught! My current psychiatrist, who is very lovely and respectful, knows that I am autistic and have schizophrenia but it took him a while and he now describes my schizophrenia as being ‘very atypical.’ I am currently looking to buy property and I am severely limited in my choice of homes because I don’t want to move away from the catchment of my current mental health treating team in case a new clinician misdiagnosis me and changes my medication. My main worry with this is that I will become psychotic, spend months in hospital and have to use up all my paid leave at work – and then my savings – shortly after taking on a mortgage!

The main problem I find with being atypical is that doctors can dismiss you or give you treatments and interventions which are not helpful and can at times be downright dangerous. An example in my experience is when a psychiatrist diagnosed me with ADHD and put me on the medications for ADHD – amphetamines. Now any person with schizophrenia will probably tell you that amphetamines and psychosis go hand in hand. This is exactly what happened to me. It was in October 2019 and I am still recovering from the massive episode of illness the ADHD meds caused. When talking to psychiatrists – even my current very nice one, I feel powerless and having an atypical presentation fills me with horror that if I see a new psychiatrist they will change my diagnosis and associated treatments and I will get really unwell with psychosis again.

More broadly, Neurodivergent people often have atypical health issues – Mental health and physical health. We often have autoimmune issues. Thyroid problems seem to be extremely common with autistic people, especially women / assigned female at birth people. Doctors often don’t quite know what to do with an atypical presentation of a health issue and this can result in them simply dismissing the person’s concerns. Some people will put up with physical pain or mental anguish simply because accessing healthcare when you are atypical is so difficult.

Some illnesses – including some that are common amongst Neurodivergent folks – are doubted as even existing by doctors. Things like Lyme disease, fibromyalgia and chronic fatigue. Neurodivergent people with these conditions can face immense amounts of invalidation and being dismissed by the medical profession. It is bad enough being atypical but then having an illness that some doctors doubt is ‘real’ can be extremely difficult. 

It is almost as if doctors don’t ever see anyone who is ‘atypical’ which baffles me because there are loads of us. Autistic people in particular seem prone to health care being unhelpful and invalidating. I think part of the problem is that we explain things differently to most people. Our communication is different and neurotypical doctors firstly don’t know much about atypical illnesses but also don’t understand where we are coming from and what we are communicating what is happening for us.

I find it can help to take a neurotypical ally to appointments and also to write down all the symptoms and experiences you are having related to the health issue and show the list to the doctor. I have even been able to do this while I was psychotic (although I am also atypical in the level of insight and self-awareness I have when unwell with psychosis!) The hospital doctor said he found this really helpful.  

In Canberra we have a psychiatrist who is Neurodivergent. He is so popular with Neurodivergent folks that his books are currently closed but he is absolutely wonderful. I think having more neurodivergent doctors is a really good thing as they are more likely to understand the ‘atypical’ and to communicate more effectively with their Neurodivergent patients. I also think all clinicians needs support to understand both atypical conditions but also their Neurodivergent patients and the ways in which we communicate. It is so frustrating trying to be heard by a doctor who simply doesn’t ‘get it.’ A lot of people avoid accessing health care at all because of this. That is not OK at all. 

I want a world where doctors ‘get’ atypical illnesses and presentations, one where seeing a doctor does not make Neurodivergent filks feel dismissed, disempowered and invalidated and leaving their appointments with no answers and inappropriate or non-existent treatment. I want a world where I am not afraid to go to hospital when I am unwell because of the impact it might have on my treatment and diagnosis. 

4 thoughts on ““Ooh I’ve never seen that before…” – the trouble with being medically atypical 

  1. One of the reasons I was advised not to seek a formal autism diagnosis by those who determined I was on the spectrum when I was 60 years old was that my experiences are more likely to be downplayed, devalued or ignored – even by those in the medical profession. Another reason was that my autism presented in such a way that it was unlikely that it would meet the strict criteria built around observed “symptoms” of children and young adults. In other words, “atypical”.

    As it is, my chronic migraines have been diagnosed as everything from “classic” to “hemiplegic”, but mostly “atypical” and my response to all medications, be they for migraine or otherwise are very “atypical” and according to my previous GP, “unique”. I return “atypical” EEG results that make results “inconclusive”, and apparently my brain alpha wave pattern is that of a comatose person – I shouldn’t be able to function at all. Adding a diagnosis of “autistic” to the mix would no doubt compound the matter further.

    And it’s true if one presents in an “atypical” manner, one is less likely to believed. One neurologist refused to believe me when I described some migraine aura symptoms as lasting for hours and sometimes days because, according to him, such symptoms “typically last for less than 15 minutes”. In fact he even edited his report so that my description of my symptoms fitted within the “typical” description of migraine with aura. How dare he.

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  2. I saw a disgusting neurologist who told me to go home and get on with my life. She was so rude! I later saw a good neurologist who diagnosed me with chronic inflammatory demyelinating polyneuropathy and I have to have IVIG infusions every three weeks. I remember one day, one of the nurses, in front of me, asking why that was the only treatment and why didn’t they try some others. I said to her, “Not for me.” She asked me why not, and when another nurse said that the rude, horrible neurologist loved some of the other treatments, I thought that made me even more resistant.
    I have Hashimoto’s Thyroiditis and my standard response if anyone suggests anything but thyroxine is, “If my mother had been born in Japan, in 1949, to a Japanese mother and an ex-BCOF Serviceman and they had married after September, 1951 and she’d come back to Australia in 1952, or, if she had been born in 1952, to a Japanese mother and an ex-BCOF Serviceman father, who’d just finished a tour of duty in Korea, went to Japan and got his wife and came home to Australia when my mother was four months old, I’d say, maybe. Why? Japan is a special interest of mine and the next best thing to having Japanese blood is a thyroid condition named after the first physician to describe it, Hikaru Hashimoto.
    My brother sometimes worries about me but I typically say that I don’t like discussing my health outside my tribe as often what autistics want and what neurotypical folks want us to have are not the same thing.

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  3. Hi 👋 I can so relate to your situation and I’m so very frustrated by always being dismissed or told- why do you want more problems? When seeking answers to my chronic illness etc.
    I will pm you legal documents, my Autistic Psychologist wrote to any medical person I come in contact with. That they have to read 1st before I interact with them. It doesn’t always work still, as there’s so much ignorance still. Nikki Haigh 🫥

    Liked by 1 person

  4. Hi 👋 I can so relate to your situation and I’m so very frustrated by always being dismissed or told- why do you want more problems? When seeking answers to my chronic illness etc.
    I will pm you legal documents, my Autistic Psychologist wrote to any medical person I come in contact with. That they have to read 1st before I interact with them. It doesn’t always work still, as there’s so much ignorance still. Nikki Haigh 🫥

    Liked by 1 person

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