I was talking to the lovely Bendy Girl on twitter earlier about the number of diagnoses I fielded before finally discovering that my childhood (and adulthood) flexibendyparty tricks had everything to do with the joint pain, fainting, fatigue, nausea, IBS, panic attacks etc that I had taken to the doctor at one time or the other.
It's quite common for bendy folk to have a whole ream of diagnostic 'horses' tried on for size before anyone suggests the 'zebra' that sticks.*
Our conversation got me to thinking of all the different things I've been diagnosed with or tested for over the years.
- depression (my main pre-bendy diagnosis at the grand old age of 13 - in retrospect a lot to do with fatigue and overworking combined with a good helping of fuckedupchildhood - I don't doubt that I was depressed at various points but I think that it was secondary to chronic pain and fatigue which I didn't understand or know how to express)
- hypothyroidism (my psychiatrist was so convinced that my depression/fatigue had a physical basis that when my thyroid levels came back normal I was sent for a thyroid stimlation test, and put on thyroxine for several years under the care of an endocrinologist)
- anaemia (again, psychiatrist was convinced there was a physical cause - I wish she had trusted hereself more)
- SAD (my mother was convinced that it was lack of sunlight causing depression - in retrospect probably a combination of weather-worsened bendy problems and the most stressful/busy period of the year for me school wise)
- BPD (I was a young woman who self-harmed, go figure.)
- CFS/ME (I had fatigue and I wasn't anaemic)
- bulimia (gastric stasis plus mental health issues, apparently quite a common issue in adolescent bendies)
- leukaemia (fatigue plus constant, un-fading, unexplainable bruises)
- being overweight (true, but used to explain joint pain, reflux/gastritis and asthma when I'm not hugely overweight)
- B12 deficiency (as above)
- schizoaffective disorder (turns out barely sleeping for several months - as in 2-3 hours per night maximum - will do funny things to your brain)
- swooning (not in so many words, but my GP's explanation for my up to 10 times a day fainting is that 'young women faint')
- rheumatoid arthritis (young woman with severe joint pain)
- fibromyalgia (the rheumy I saw thought that my fatigue and pain must be a sign of fibro, despite diagnosing me as bendy, showing just how little she knows about EDS)
- vaso-vagal syncope (this diagnosis is still standing - it's pretty much Latin for 'you faint', and as such is a prime example of doctors putting the presenting complaint into poshmedicwords and offering that as an explanation)
- somatisation disorder (posh medic for "it's all in your head" - not to be confused with "you're making it up", the idea being that it's a physical expression of mental distress - often confused with "you're making it up" and therefore frequent accusations of this are made with no referral to psychiatric services for treatment of what is an actual disorder)
- Factitious disorder ("you're making it up" not to be confused with somatisation disorder - I apparently get my kicks out of hanging out in NHS waiting rooms, taking 20 pills a day, being too ill to carry on with uni, needing my partner to shower me - well, ok, that one's not all bad - drinking pints of salt water, using a wheelchair, losing consciouness in public, slurring my words and seeming drunk, subluxating and dislocating my own joints, etc.
As each differential was disproven, I was more and more treated like I was faking, and less and less like a human being. Noone referred me for psychological help to deal with a serious somatisation or factitious disorder. Even though I have a diagnosis now, as my GP knows so little about EDS, I go through the same shit every time I need to discuss a new symptom - I have a genetic disorder that affects pretty much every system in my body, but my GP can only just get his head around the fact that it affects my joints.
Maybe it will help you to understand if I tell you that I put off going to the GP for months when I had the awful bruises that led him to seriously consider that I had leukaemia (bruising as it turns out is just another EDS quirk), because I felt so awfult that I could well believe that I was dying. That looks awfully melodramatic written down, but it is what it is.
Every failed test (yes, what should have been good news, felt like a failure) was just more evidence to myself that I was making this up, that everyone gets tired, everyone gets sore, and it was only me who was too lazy lazylazylazy to get to the end of the day without crying. When everyone tells you that you are lying when you tell them you don't feel well, that there's nothing wrong with you, that you're lazy if you get the bus into uni instead of walking, you take that message into the core of you.
You know that I didn't realise that I'd had joint pain for years until I went to my friend's house one day and the air was thick with weed, and the pain went away? I had been told there was nothing wrong with me so often that I couldn't even work out what pain felt like.
Finally realising that not everyone felt this way every day, finally finding out about EDS and talking to people who'd had the same experiences as me, that was life-changing. I could finally listen to my body and believe what it was telling me. If I'd been diagnosed at 13 when I first started to be significantly disabled by EDS, things would be very different for me now.
I understand that the collection of symptoms - pain, fatigue, IBS, headaches, fainting - could all be explained by depression. I understand that they are all associated with "heart sink" "worried well" patients. I understand that doctors don't get it right all the time. But when you are told for years that you are lying, how are you supposed to trust yourself? I don't know if I'll ever not feel like I've been let-down by these doctors and the system they work in.
When you work through a differential, first you check for the fatal things, and then the common things. If you don't find either, you don't just stop looking. You start looking for the stuff that's less common. I want to tattoo on the arm of every medical student and doctor "sometimes it's zebras".
*as the old medical adage goes : when you hear hoofbeats, think horses not zebras.