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.