On Sunday morning, I tweeted ‘would people be interested in reading my very inexpert thoughts on misdiagnosis, gender and mental/physical health?’ I got lots of interested responses so here are the aforementioned thoughts! Some of these may strike a chord with people and others will be unique to me and my circumstances.
I originally went to A&E in Glasgow back in May after fainting and vomiting. I was told I was suffering from stress and sent away with anti-sickmess tablets. Some tests were done but none on my head or brain – the CT scan I had in Italy was done very quickly and instantly showed there was ‘something in my head’.
Being misdiagnosed probably didn’t make a difference to my prognosis but it did make the process more difficult – we certainly wouldn’t have gone to Italy if we had known! (It seemed like a good idea for stress, but perhaps less so for a brain tumour. ..
I’m a bit hesitant to entirely blame the doctors as I wasn’t experiencing headaches at that point, and was much more concerned by my joint pain, which I thought might have been arthritis or something similar – since the first surgery the joint pain has mostly gone, so it’s likely to have been part of the package of symptoms caused by the hydrocephalus. Before I knew what was wrong with me, and after I was fairly sure that stress couldn’t explain it, I went through lots of different options in my head, ranging from arthritis to some form of fibromyalgia or chronic fatigue. By my actual diagnosis, I could barely eat, was struggling to walk and felt a lot more unwell than I have recently (with the exception of a few off days.)
I’d like to focus this post on two questions – firstly, the link between mental and physical health and secondly, the question of whether the same action would have been taken were I male.
Mental health can have an impact on physical health and vice versa. It’s difficult to tell which declined first for me – and virtually impossible to establish any causal link – but that there is a link is clear to me. Exactly what form that takes will probably be better explained by a medical professional! Being stressed can take a physical toll, whether that comes out in food or general ability to live and keep yourself and your surroundings clean and tidy – these have never been my strong point when I get stressed but became impossible. Having an undiagnosed tumour also meant I didn’t have the energy or ability to do anything much when I realised how badly things were declining. I don’t know how long it was there for before diagnosis and most of me feels its probably not something I need to know.
Being less physically independent also has a toll on mental health – I’m very grateful to my parents in particular for helping with lots of things, and I’m trying to do as much as I can, but one of the reasons we’ve been trying to do so many trips is that it feels much better mentally to be living, not just surviving.
So, onto gender. A couple of friends who are both doctors in Glasgow said they suspected the same thing I did – that is, if I’d been male and presented with similar symptoms, I’d have been put straight in the CT scanner (which would have had its own problems because I wouldn’t have been with family and we’d have had to get me back home for treatment and recovery from surgery, but those would have been very different problems to being diagnosed in a country where I don’t speak the language!)
I’ve known for a long time that medics do often attribute serious physical health problem for young women to their mental health or lack thereof. This is not to belittle mental health issues at all, and I haven’t so far developed my thoughts beyond ‘this is a thing’ – I certainly don’t have anything approaching an actual suggestion or way forward! I’m fairly sure this is what happened in my case – certainly the second time at A&E. A young woman presents with vomiting and fainting and a history of anxiety – the ‘easy’ answer is that those physical symptoms are caused by anxiety (even if that really didn’t explain my other symptoms at all). While men are misdiagnosed and there are huge issues in the treatment both of mental health and of cancer among men, this particular issue does seem to arise for young women more often.
The fact I wasn’t given the ‘right’ tests is actually less concerning to me than the fact I wasn’t offered any real help or follow up. Had it been stress, I would have thought pointing me towards counselling or medication or a combination of the two would have been a good idea – especially if it was enough to make me have as troubling symptoms as I did. It may have been a misdiagnosis, but as far as they were concerned it was correct, so acting on it rather than just sending me home would have been helpful…
These thoughts may well become more substantial and at the moment are all very vague and undeveloped but I thought it was worth sharing.
ETA: Photo of me in hospital in Glasgow looking like Eleven from Stranger Things