Unsolicited medical advice? No thank you!

I am not a fan of unsolicited, persuasive health advice from, well anyone really.  I am an autistic person who has a diagnosis of atypical schizophrenia. I have spent many years accessing health services and on more occasions than I care to count have been misdiagnosed, misrepresented and mistreated.

My mental illness is apparently unusual in presentation plus I am autistic which combines to make accessing diagnostic services from mental health clinicians very fraught and stressful. Like many other neurodiverse people my autism diagnosis is hard fought and won. It represents a major part of my identity, more so than almost anything else. My gender identity is also a pretty big factor in how I view myself. Mental health is less important when I am formulating my sense of who I am although it definitely plays a part. 

Since I accepted my autism diagnosis in 2002, I have had several admissions to the psychiatric ward for mental health issues. Each time I have been terrified that a doctor would cancel my autism diagnosis. I remember a psychiatrist during one admission flippantly saying he thought I was ’too cool to be autistic.’ This resulted in some stress and panic from me. I said to him desperately ‘But I write books about autism! you can’t take that from me.’ If that psychiatrist  had un-diagnosed me it would have had a huge impact on my sense of who I am. At quite a late age I found my autistic ‘tribe’ and started learning who I am as an autistic person. Losing that would be a grief akin to losing a person I love. I’m fairly certain it wouldn’t help my mental health all that much either. This seems to be a common way of seeing things among my neurodiverse peers. Sadly it seems to be just as common for clinicians to have little understanding of the impact of such pronouncements and comments on those they are tasked to care for. Accessing help can be a minefield of stress and confusion about diagnosis and identity as a result. In the past I have put off accessing help even though I needed it for fear of having to go through drama about my diagnoses.

Even without doctors misdiagnosing and missing people, there is a whole population of people who will happily dispense healthcare and diagnostic advice apparently from the basis of little or no knowledge of what they are passing comment on! These range from people who don’t have a lot of knowledge but make up for it with a  wealth of opinion telling autistic people and parents of autistic kids all the reasons the diagnosis is ‘wrong’. It can come from friends dishing out diagnostic and health advice from what they think is a place of care. But for someone who has fought for many years to gain the appropriate diagnostic descriptors being told by a friend that your experience is actually ‘wrong’ can be stressful and triggering.

Problematic health advice goes beyond diagnosis. Medication is another area where many people have strong opinions, and I don’t just mean the most obvious group – dangerous anti-vax charlatans. I blocked an autism world colleague a while back because he told me to stop taking the medications I take for schizophrenia and to meditate instead. Now I’m as much a fan of mindfulness as the next person but I know from experience if I stop taking my meds, all the mindfulness in the world isn’t going to help! This advice was actually dangerous. Had I followed it I would be very unwell – risking my reputation and potentially my life. Not such helpful advice regardless of whether the person giving it thought they were helping! I felt this person had quite a dangerous attitude based presumably in ignorance.

I think a lot of the issues happen where people think they are helping but don’t know much about the person or their situation.  Both health professionals and laypersons can be guilty of this. Giving out this kind of advice meeds to be done with a willingness to listen and understand and without ego. I am often asked to provide advice and the first thing I think is about the responsibility which comes with that and how whatever I say needs to be helpful to the person and respectful of their circumstances and who they are. I feel like a lot of people dishing out advice could benefit from adopting a similar approach. Flippant statements can be devastating.

Some tips:

  • People generally don’t enjoy being given unsolicited health advice. Giving unsolicited health advice doesn’t provide a lot of benefit to people.
  • It can be dangerous to give some advice to people (e.g. ‘don’t take your meds’ etc.)
  • Assertiveness is a good skill if you are on the receiving end of this kind of thing. Explain your concern, why it is an issue and give the other person the opportunity to revise their statement  / apologise 
  • Autism and other neurodivergences are frequently a strong part of a person’s identity which means statements questioning diagnosis etc can be very hurtful and unhelpful.
  • The impact of statements on things like diagnoses and treatments can be much more significant than the person making the statement thinks.

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3 thoughts on “Unsolicited medical advice? No thank you!

  1. I’ve had Fibromyalgia for years and the wealth of good intentioned, unsolicited advice I’ve received could fill a huge book. I’ve just learned to smile and nod and change the subject.
    This post is a great reminder that unless someone asks, they probably don’t want advice.

    Liked by 1 person

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