Recently I’ve been watching bits of a spoonie Christmas calendar thing on instagram. One of the questions was what diagnoses people have. Most people seem to have multiple, which makes sense but leaves me feeling a bit odd that my health is so severe and yet I only have one: severe me/CFS*. I’ve often wondered how on earth people end up with so many diagnoses. Here are a few of the reasons why I don’t have many diagnoses:
– my Drs have placed me on many medications without trying to investigate why I may be having those symptoms. For example, for around 5 years (until recently) I took medication associated with IBS and yet nobody ever looked in to why I was having those symptoms. Likewise I take medication for dizziness, nausea and allergies with no investigation having taken place as to why I need them. It could all come under the same banner or different ones, I just don’t know.
– I have been too unwell to see a specialist for a number of years. I was due more extensive urology testing but became bedbound and unable to travel. I have not been able to pursue autonomic testing because for the last 5+ years I have been too unwell for a tilt table test.
– As above, I cannot access Drs that cannot visit me at home which really narrows things down and pretty much rules out the NHS.
– I have to pick my battles because of an unsupportive and social worker. I cannot bring anything up that could be thought of negatively or misrepresented in my records, which is most things!
– with regards to my mental health and possible autism: I am not well enough for long assessments and I am definitely not well enough for bringing up past trauma.
– I used to put off seeing the Dr for most things and hid many issues as a teen /told myself I was just lazy. Then my health declined and I haven’t really felt able to push them because in my experience it’s very hard to be believed when you have so much going on and then add ‘by the way, I’ve had these other things going on for 15 yesrs/20 years/my whole life. (there definitely needs to be less of a stigma around seeing your Dr about non acute health problems or Neurodiversity early on). My reluctance also wasn’t helped by attitudes when I did start bringing things up before they were severe.
– My ME Dr was of the opinion that those with very severe ME will have fibromyalgia and POTS as symptoms of their ME. He saw no need for additional diagnoses. Some drs prefer this approach.
– The functional/ecological medicine approach is to look at the ‘why’ of illness. For these reason although I have abnormal test results showing various abnormalities such as mitochondrial dysfunction, gut dysbiosis/fermenting gut, abnormal cortisol and pancreatic insufficiency, these are viewed as part of a clinical picture and not as individual diagnosis. Additionally portraying them as such to the NHS would get me nowhere as they are not acknowledged outaide of that field and the field of research.
– other health issues I experience are potentially quite rare and difficult to diagnose. I would have to make sure I am in a good position to be able to go down that route and advocate for myself. It could be that despite seeing several neurologists in 2010-2011 I was just seeing the wrong sort and not those knowledgeable in the conditions I may have. I certainly believe I was fobbed off (Neuro 1 said nothing wrong or a virus that would leave, Neuro 2 said possible cfs but cfs team said possible neuro, neuro 3 said ‘you’ve seen quite enough neurologists already’)
I also believe that the way western medicine is practiced means compartmentalising things by body part and function which means that whilst something may be a symprom/complication of an overarching condition if you see a specialist in that function /body area then you are likely to end up with a diagnostic name for that issue (unless you get fobbed off). I think this is really problematic in that it stops our bodies being treated as a whole unit. It’s wonderful and can be very useful (life saving even) to have people who are specialists in a specific function /area of the body but are they really going to know for example how a treatment might affect the rest of our health and our own combination of issues/diagnoses?
I find it quite interesting that so many people list their diagnoses on forums and instagram. Perhaps I cannot relate fully because I don’t have such a big clinical picture to put out there. I can understand the use of tags to find people similar to you, but on the flip side I’ve always felt that diagnosis isn’t everything. I know this all too well having gone without a firm diagnosis at all for over 5 years! I do think that lists of diagnoses can be quite misleading. It says very little of how a person is affected and to what degree or the ways in which their illnesses interact. I wonder if it also feeds in to a culture of competitiveness within the chronic illness community. I also wonder if due to most of us having been disbelieved at some point whether we feel the need to prove ourselves and almost list our chronic illness credentials when the truth is all should be welcome regardless of diagnosis. Id like to engage with people on the basis of shared experience – and whilst comparing diagnosis can be a way of relating to each other I’m not convinced that listing them is something I will feel comfortable with or understand…. Though I respect others feel differently.
* I do also have a diagnosis of irlen symptoms and dyspraxia but see these as separate to my physical and mental health.