Saturday, September 01, 2007

A question of chance

Even now I shudder to think what would have happened if I hadn't picked up that particular magazine from in amongst all the discarded old editions of Reader's Digest, National Geographic and The People's Friend. Awful. All piled up on a table in the middle of a room. That and piles of leaflets about chlamydia, diabetes, havingasmear, beingawellman, and do you have bowel cancer? well do you? I will read anything, junk mail and ingredients lists included if desperate enough but I'll always take interesting given the choice. So when I saw something called Arthritis Today I picked it up, thinking maybe there would be something in there I could use to help myself, and so there was, just not in the way I expected there to be.

The reason for my being there that day I've long forgotten, but I'll never forget shaking all over as I read the words printed on the page. Feeling sick, the room spinning away from me as I was completely overwhelmed. As I left I asked if I could copy the magazine article, was told I could keep it, they had finished with it.

Once I arrived home I read through the magazine article, again and again. I was in complete shock. I literally couldn't believe what I was reading...someone else like me. So many similarities. Someone else who'd had multiple operations without success. Someone else who had hips slipping out of their sockets, and wore tight jeans to try to keep them in. Someone else who had been called a hypochondriac. Someone else who had been called a hypochondriac. I knew. I just knew in that moment that I had found what was wrong with me, in a journal that my doctors had supposedly read and then thrown away.

Despite that, however much I knew that this was what had been causing all the problems I'd had all along, I was terrified. Like Catherine Brown, the lady in the article I remembered being told I had growing pains as a child, and being called a hypochondriac, but then, over the years things had become far more serious than that. I lost count of the number of times one doctor or another told me that I had nothing physically wrong with me, only psychological problems, that I needed to see a psychologist, and I never understood why if I must be so terribly disturbed, mentally ill even that not one of them ever made that referral. Once there was a psychiatrist, insisted upon by the GP who later laughed when she asked me if it were better to be physically ill than mad. The psychiatrist told me he thought I was brave, and that he wasn't surprised I was depressed, all things considered, but no, not mad...definitely not mad. Maybe not, but I came very close to losing my mind.

I rapidly found the websites for The Hypermobility Syndrome Association and The Ehlers Danlos Support Group, but I was so afraid I did not even have the courage to ask for advice or support from these incredibly welcoming people. But I read. Everything. I devoured what little information there was on both those websites before I went looking for more and I knew. I just knew.

I was reeling. In a state of shock.

The following day I had a physiotherapy appointment booked. The only person who actually believed I had a physical rather than psychological condition was my (NHS) physiotherapist. Unlike the surgeons who once I'd failed to get better told me it was all in my head, and that there hadn't been anything wrong with me in the first place, screamed in front of a ward of people for good measure, this woman was both a professional and a human being. She also knew me, knew how hard I had worked at any task she had set me to do, and knew how much I wanted to get better. I took the magazine and some printed information along to the one person I trusted, and when I got into the room she had the same magazine in her hand.

We both looked at each other, burst out laughing, within seconds I was crying, sobbing, being given a hug, and tears being shed by her too, this woman who'd worked so hard to help me for so long. Unlike my GP's she'd seen her copy of Arthritis Today, read the article, realised instantly how it applied to me and had a 'lightbulb' moment. Maybe I wasn't mad. Maybe. Maybe? I didn't really dare to hope. She really had done her research and had a plan in mind for me to go to privately to see one of the leading experts in EDS. There were a few reasons for going privately, partly that I was so ill I couldn't wait, but more worryingly that we didn't feel any of the GP's at the practice I was with would have provided a referral, or if they did it would be prejudiced with their opinion of me as had happened previously. The other consideration was that even though instinctively I knew this was right, I was all out of fight. It had been so long, with so many doctors saying I was making things up, I'd lost everything. My career, my job, my friends, my relationships, and very nearly my life. Not even my family believed me.

They were however willing to fund the cost of a private appointment and travel to London, not really knowing what else to do. The appointment was arranged for the following week, and the evening before I had to see my GP. During that appointment I was so terrified by what he said to me that had there still been time I would have cancelled the specialist appointment. I was laughed at, told I was lying because I liked the attention. When I tried to stand up for myself, to explain that my physiotherapist expected me to be diagnosed with EDS, that she had made the referral it provoked further laughter. I was told there was no way I had EDS, that I was not hypermobile, that if I was it would have been diagnosed years before, that I would have had problems previously. When I tried to say I had had problems, I was sneered at and told no, serious problems. As I went to leave, every step on dislocating hips a painful struggle I heard further laughter, and the mocking words 'but I'm willing to be proved wrong'

I was terrified. I thought it must be true because this doctor said so like all the other doctors said so.

I must be wrong.

I knew I wasn't. Not really. But I must be. Because this doctor said so. And so did every other doctor.

Later that evening I had to endure questioning from my mother about what I was going to do if (with that tone of voice that said I mean when but I'll say if for now until I can say I told you so later on) I didn't get a diagnosis the following day. I didn't know what I was going to do if I was wrong about this, if my physiotherapist, the only person I trusted, the only medical professional who believed me was wrong about this. I didn't say it but I thought it would probably be the end if I didn't get diagnosed. I knew I wouldn't be able to withstand the pressure of the 'psychological problems' label, with no support from my family against that, and nothing but gut instinct and a body that didn't work getting worse and worse every day to tell me that I was physically rather than mentally ill, I didn't think things looked good if I didn't get diagnosed. I decided that if that were the case then there would only be one way out.

Fortunately that wasn't necessary. I was diagnosed. I couldn't quite believe it. Too many years of being told it was all in my head. They're used to that, those rather special doctors for us rather special bendy people, but even so what happened to me made them go rather pale.

But this is the important bit, the really secret special part. Ssshh. Don't tell anyone. The part that got me through, that kept me going all those long years when no-one believed me, when my body just kept getting worse but the doctors kept saying it was my head instead and even I was thinking that I must be mad if everyone said so. Especially the doctors. You see I always believed that one day I'd find out the truth, and I'd be able to turn around and say, 'see, I told you I wasn't making it up, I was telling the truth all along' and that when that happened everyone would be as pleased as I was, because well, didn't they all want me to not be crazy?

The secret of course is that I was the only one pleased to find out. Everyone else would rather that I had stayed a crazed attention seeking liar because that meant they didn't have to face up to their own mistakes. Because that GP wasn't the only one who really didn't want to be proved wrong.


Ordinary Girl said...

Have had a lovely time "meeting" and learning all about you. I must say, I'm a little in awe of you at the moment!!

I shall most certainly be popping back!

Chin up girl! (Preferably without dislocating any neck thingies!!)

Liz said...

I saw your avatar on a comment you'd posted on another blog and was just about to send you a message saying "Has anyone ever mentioned EDS?" when I saw this post. Glad you were diagnosed - even if most of the doctors you saw up to that point were totally useless at the task of helping you.
Pop over to if you have time - we don't bite!
Good luck!

BenefitScroungingScum said...

Thanks OG, it's so lovely of you to have read through everything, and commented! I'm not sure why you'd be in awe of me though? I'm just like everyone else...neurotic, full of insecurities and sex obsessed ;)
Do pop back, I'll keep a place on my sofa 'specially for you, BG x

Hi Liz, welcome, and thanks for reading :) Yes, it did take rather a long time to get diagnosed, and things were pretty awful for a long time, but I have some great doctors know and life is steadily improving :)
I know the EDS site well ;) it's a very friendly bunch there as well as the HMSA :) I'll be popping over to your blog to say hello, Bendy Girl x

Quite Simply Complex said...

PS. Just as you have got a space on the sofa, OG is no more. Instead, perhaps you could put me on the invite... :-)

having my cake said...

Reading accounts like this make me want to tear my hair out and scream at the smug incompetence of some of the professionals who are supposed to be there to help us. Im so sorry you had to go through so much personal abuse in order to finally get a proper diagnosis.

BenefitScroungingScum said...

Thank you Cake. I know, but still don't understand why, that it became very personal and that many frustrations were taken out on me by supposedly professional people. That should never happen to anyone. I want it to be different for the next generation of EDS children. I simply wouldn't have this level of disability if I'd been diagnosed in childhood as I should have been. It's not too late for them.
Fortunately though I have some great doctors helping me these days :) BG

Becca said...

Jesus, BSS.

You've just written my life story.

Almost a perfect transcription.

I had almost started to believe them when they started to say I was psycho-somatic.

EDS here too, same thing, down to a tee - except that in the end I managed to get someone to refer me privately to an NHS rheumatologist, who sent me to the Bendy People Specialist in Leeds (I live in Manchester) and that was that.

I'm 22 now, I got diagnosed just before I turned 20.

Scary innit?

I wonder how many people there are out there going through the same...

BenefitScroungingScum said...

Hi Becca,
I welcomed you in the other comments, but welcome again.
I'm so sorry we share such similar backgrounds (I saw your profile, we are uncannily alike!) but I'm happy you got diagnosed, and I'm so glad it was at an earlier age than me, I know from Prof Bird (isn't he a darling) that it will make a difference to you long term to be diagnosed at 20, even though we should be diagnosed by puberty at latest.

I personally think there are huge numbers of us out there going through similar. It's getting a little better with the internet, but still people have to know they;re hypermobile to start looking or it occur to them that's a problem after medics tell them it isn't, and I never even knew I was double jointed. Just from the characters mentioned on this blog, Big is hypermobile and has enough of a family history to get diagnosed with EDS if he ever needs to, Toes is mildly hypermobile, The BYM is hypermobile and struggling a little atm as he's not kept up his fitness levels. They definitely present differently to us as they don't have the impact of the female hormones. I know of at least 2 other families in my small town who are diagnosed EDS, multiple hypermobile with problems but no diagnosis ppl, so yeah, I think its vastly under diagnosed and not remotely rare. either that or that I'm some weirdy magnet for bendy men ;)

Do stop by again, I had a look at your profile, but I couldn't work out which one if any is your active blog atm? Let me know and I'll link to you, Bendy Girl x

frog ponds rock... said...

Hi, My daughter has been "ill" since February 02. she has been labeled as having chronic fatigue syndrome, because that sort of fitted. and it was a convenient label. all blood tests came back negative etc etc.I am very familiar with bloody condescending doctors attitudes. I enjoy your blog very much. cheers Kim.

pinkShark said...

And this is why I hate going to see my peadiatrician. I became ill when i was 11 years old, and was diagnosed with fibromyalgia and chronic fatigue syndrome when I was thirteen.

This Dr kept telling me that there was nothing wrong with me because although lupus runs in my family, I hadn't got it, just some of the symtoms. And apparently that meant that nothing else could possibly be wrong with me. And just all sorts of other shit. Grrr.

Shullie said...

having 40+ years of the same kind of treatment as your self, -it's been a physio who told me that I was hyper mobile... as I have got to 50 and after years of pains, my body has given up, and I seem to be falling to pieces. My legs don't work, my knees slip in and out, as do my hips, jaws, shoulders, fingers toes, and more recently my elbows, my GP finally in a last attempt to convince me it was all in my head my GP sent me to the physio, who took one session to tell me what was wrong. Have been to see the Rhematolgist, to make sure it is not rheumatoid arthritis, - which they know it's not because of the blood tests they do - though I am now it appears riddled with oesto arthritis, I am waiting to be referred to see a specialist. Nothing back on that as yet - 3 weeks and counting.

I also have heart problems - and have read that it could be linked.
Which is something I can't wait to share with the cardiologist, as they don't understand why I have these heart problems.

My mother died with the heart problem at 44 but I know she had many similar joint problems, as did other members of her family.

My son has the very elastic skin and painful joints - but won't see anyone - he's 25 and doest want to be labelled as I was.

My oldest daughter has always had problems and is ill at present with 'painful joints', her GP is just as bad as the one I have, and doesn't seem to want to do much about it... keep saying perhaps it's a virus.

I am at present working 3 days- mainly because of the heart issue... but am finding it increasingly hard to walk day by day, and now my hands and elbows are going - I could cry and do at times.

Except since my physio gave me a 'name' for it, I have found people like your self, who tell their story and that has helped so very very much. I know I am not mad, I know that there is something really wrong, and there are others out there who really understand.

I know I won't get 'better', but to know there are others other there who understand gives me back my self esteem and hope.

Toulouse31 said...

Sorry, didn't realise this was an old post, i followed the twitter link.

elleandtheautognome said...

Egads, that all-in-your-head stuff makes me so frustrated! With CRPS, Dysautonomia and an appointment in a few months to head off to see the London specs about the preceding hypermobility that was never discussed before despite screaming growing pains etc, I get where you're coming from on the incorrect psych' label. Grrr. So glad for that one good physio' that made the world of a difference for you, much love, x

Tanya Marlow said...

YES. Oh yes.

Different illness, same story - except I'm still waiting for the 'oh, it's not psychological, after all!'

It's scary, how doctors have so much power without humility.

Tania Tirraoro said...

Such a powerful post and how brave and determined you were to keep going despite all the naysayers.
I too, discovered via an article - on the Genetic Alliance UK site - by accident. My son and I are now diagnosed. I've written about us on the RareConnect Community:
Please do post your story there too if you haven't already, as I know it will help so many people.
Tania xxx

The Runner said...

I was told when I was about 13 that I was lazy, that I was making up the knee pain to get out of doing exercise, and that there was nothing wrong with me. For (only!) 2 years. My Dad believed me though, and thought it unnatural for a 14/15/16 year old girl to be hauling herself upstairs like an old lady clinging onto the bannisters.

I was referred (begrudgingly) to the orthpaedics team by my GP. When the appointment came through it was for 18 months time! So my Dad used his work health insurance and I saw the guy privately. Within 2 weeks. I had a few months of physio- and that failed to help. My consultant was pioneering a new op, and I was the first girl ever to have it done in the UK. I was a guinea pig. I had the pleasure of all 8 physios in that hospital crowding around my hospital bed to look at everything so they could learn more. A year later, I had the same surgery repeated on the other leg.

This has meant that I didn't end up going through the cartilage in my knees after all, and I haven't needed further surgery (save for taking the annoying metal bits out).

I learned a valuable lesson - if someone tells you they hurt - you listen and you believe them. Particularly a child. For me to have been "making it up" for a period that constituted at that point almost a quarter of my life - I wouldn't say that was common, would you?

Toulouse31 said...

My story so, so similar to BG and Shullie, i've just developed osteoarthritis and carpal tunnel in my hands which is my 'last straw' thing! I got a Fibro and also Hypermobile syndrome dx in 2004 at age 42. The hypermobile bit was almost a throwaway line, I had no idea then it was that rather than the fibro that was making me so disabled. I don't dislocate but my veins are hard to find, i had lense implated surgery for high myopia (-11) (complications with healing) bladder surgery (slow healing) IBS, impinmgement of both shoulders bi lateral tennis elbow, and so on. My gp is sympathetic but I really need to see an expert. It is really my chiropractor how has kept me going for the past 6 years.
Who do you reccomend I see (private patient) Kaila (and others above) in London/east anglia? I am 50 this year and feel 150. If I don't do something now i'm looking at a very painful and more disabled old age, not to mention both my sisters and daughters have same issues, just younger and less advanced than me. I am also confused at the difference between EDS and Hypermobility syndrome.
BG I have followed you for a while and your uplifting 'can do' writing style always brightens my day :-)

Toulouse31 said...

BG The links above must be out of date. I would like to read the article you refer to about Claire.
I did find lots in that I didn't know!