Thursday 24 November 2011


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.


  1. thank you for writing this. i'm crying, but not totally in a bad way. sorry this happened to you too. glad i'm not alone. i'm not the only one who can't tell when she's in pain, really? the normals just stare at me and twirl their fingers by their temples.

    mine's complicated by the fact that i do, undoubtedly, have psychotic depression.

    i also currently have a fibro diagnosis, and hypermobility.

    i still don't really believe i have fibro. there's too much it doesn't really seem to cover. also, the attitude of 'you've got a label, that's what you wanted, now bugger off' that goes with it is unwelcome.

    they tried diagnoses of various pulled/sprained muscles (i was a very physically active kid, despite the pain - i didn't know it wasn't supposed to hurt like that) then later lupus, osteoarthritis, rheumatoid arthritis, CFS, leukaemia, a brain tumor, somatisation disorder (still on my records, I think), borderline personality disorder (same reason as you), and 'go away and stop bugging me'. not in that order.

    everyone wonders why i'm angry. not angry about being disabled, that's just life happening. angry that it's been fifteen years and no-one is, or has ever, taken me seriously. (well, no medical types).

    if you don't mind me asking, how did you get your EDS dx in the end? i have a lot of the symptoms, but am suffering from 'go away, crazy woman' according to most of the docs i see. how did you get them to take you seriously, or was it just chance?

  2. Thank you for writing this - it's crazy to read.

    I'm very lucky - my GP is absolutely fanbloodytastic and I have a great relationship with him. He was the one who suggested EDS - I went to see him about joint pain and he remembered that I bruised very easily and put two and two together.

    However, it hasn't always been this way - I remember crying as a child because of pains in my legs and being told it was just growing pains. I was told that I was a hypochondriac because I always felt so tired without a physical cause (anaemia, hypothyroidism etc.).

    I have a psychiatric diagnosis too - OCD and depression and it always makes me so wary to actually tell a doctor in fear that it will cloud their judgement. Just because I'm also a little bit mad in the head doesn't mean I can't have a sore body too!

    I'm waiting to see a rheumy - I've been diagnosed by a geneticist and I'm pretty nervous about seeing someone unknown.

    Thank you again


  3. the lack of understanding EDS really astounds me - it's not as though it's one of those 'once in a lifetime' syndromes - I've seen about six patients as a student, in different specialties, so a standard GP should have had plenty of exposure, and even if not, be willing to learn about it for their patient. Grrr.

    It makes me sad too after reading one of your recent posts that you don't always feel that your peers don't go the long way round for you - but then disability awareness varies a lot, even though it shouldn't in our walk of life.

    Congrats on starting driving - that's on my list for next year (if I get through finals etc) - have fun with it! xxchar48

  4. I'm so sorry you've had to go through all this. I hope that your writing will make a difference for some people.

  5. Thanks all for your comments, sorry for not replying before - I've not had much internet access the last couple of days. Hugs all round =]

    Jaime, I got diagnosed because pianomaths told me her sister was diagnosed with HMS and I looked it up to see what it was and freaked out because it was just me. It took 8 months after telling my GP that I thought it was that to get referred to rheum, who dx-ed HMS quite begrudgingly (they don't like it when you tell them what you have...) but knew almost nothing about it. My mum had an EDS dx from Prof G a few weeks ag. My GP still treats me like a crazy woman, because he has no understanding of HEDS... Oh well! At least I don't think I'm making it up anymore =]

  6. I have been using bovine supplements for almost four years.And because of it i have made great improvements to my overall well being.

  7. I've been reading through your bendy posts, and am so relieved to hear that somebody else has had the exact same thoughts that I have. I was diagnosed with CFS aged 13 and, aside from some of the specific misdiagnoses, seem to have a very similar experience with doctors... My mental health has suffered dramatically as a result of blame inflicted on me by the medical profession, which then confirms their lazy beliefs (because you can't be both mentally AND physically unwell, obviously). Anyway, just wanted to say thank you for writing this. :) I'm also a queer, vegan (ish, recovering from an eating disorder so taking it slow!) and potential bendy... Nice to know I'm not the only one. :P x