Bendy Bloggers

4/23/2009 05:28:00 pm BenefitScroungingScum 14 Comments

Some time ago I mentioned to fellow blogger Kim that the health issues her daughter Veronica was experiencing might be related to her hypermobility. Veronica has just been diagnosed with Classical Ehlers Danlos Syndrome.

When I was first diagnosed with EDS I made a promise to myself that I would try to use my negative experiences with lack of diagnosis to ensure others with undiagnosed EDS did not have to endure the level of difficulty I did in finding a correct diagnosis. I thought that if by telling my story I could spare just one person from the same it would be worthwhile. I've long since lost count of the number of people who've been diagnosed because they saw this blog, or a comment I left for them, or were fortunate enough to be seen by one of the many excellent doctors and nurses I've been lucky enough to be helped by.

Most people with EDS have at some point been told by their doctors that they were told about EDS in medical school, but told it was such a rare condition they would be unlikely to ever see a patient with it. I'm no statistician but I don't believe 1 in 5000 people to be especially rare, and that the true occurrence is likely to be much higher if diagnosis were made in timely fashion. All doctors, but especially GP's have their 'heart sink' patients who are always appearing with some new symptom or other. I suspect that a fair proportion of these 'heart sink' patients are people with undiagnosed HMS or EDS, and the real shame is that it is incredibly quick and easy to check for with just a few questions and clinical observations. The Beighton scale takes less than two minutes to perfom, and although many hypermobile people can score poorly on the test because it doesn't include the hip or shoulder joints it is still a useful starting point, particularly if combined with the Brighton criteria.

I'm reposting my diagnosis story underneath this post for those who've not yet seen it.

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.


alhi said...

I remember when I read this the first time and was horrified at what has happened to you. I've read it again and I'm still horrified.

(((hugs))) xoxo Kim

Veronica said...

Thankyou. Just, thankyou.

cogidubnus said...

Hon you're definitely mad...but that's good isn't it? Seriously you're an inspiration!

Casdok said...

Sorry that you had such a negative experience but really great that you can put it to good use to help others.

Dark Side said...

You are a massive inspiration to anyone and I am so pleased your tenacity paid still makes me cringe reading this post...(((hugs))) xx

Anonymous said...

im really sorry your diagnosis was missed
the trouble with general practice is knowing when to investigate/refer and when to reassure
the americans over investigate everything for fear of litigation.
most of us live happily with the realisation that a few patients will return still troubled and then we will pick up the rare and unusual.
we will make delayed diagnoses and miss cases. i hope that this is better than overtly worrying lots of patients with no serious illness,
some doctors think they are gods, most of us dont

Unknown said...

I am so glad you got your diagnosis. My wife went through that "It's all in your head" thing from her family, even though three of the six daughters all had the same 'issues'. When the older girl was diagnosed, their mother effectively stuck her nose in the air and never, ever, dealt with it.

Fire Byrd said...

You have come through so much, and are so strong as a result. It is a pleasure to know you.

Achelois said...

That was then this is now... believed. from your ehlers danlos bendy friend. The hidden disability we share, I know you know how it feels and reading your blog helps me through the days of my life. Thank you. Thank you Thank you....

Alhi: It's weird, I just don't see the awfulness of it, think I must've got too used to it all over the years!

Kim and Veronica, No need to thank me, but hugs are always good:) Hope you're doing ok?

Cogi: These days I won't associate with anyone who isn't just a wee bit nuts;) How're you getting on?

Cas: It feels like the only sensible way, and I know I'm in the presence of a true expert around you!

DS: Thanks honey, hope you're feeling better by now?

Anon: Thank you, what a lovely comment, it's much appreciated. I hope this blog reflects all the good medical professionals I meet as well as it does the negative experiences. I don't envy any doctor for what you have to put up with, but I can't help but feel a general change in the way undiagnosed symptoms are explained to patients would make things so much easier for both parties. In my case really it's not the late diagnosis that bothers me, but that the attitude of doctors was to insist it was somehow my fault rather than being confident enough to say they really didn't know what was going on.

Lou: It's sad how common a situation this seems to be for EDS'ers. Here's hoping it'll change in the future. love to you all

FB: Right back at'cha x

Achelois: How are you lovely? I'm glad the blog helps! Think of you often x

steph said...

I know I've said this before but having read your story for the 2nd time, I've so many similarities, it's uncanny.

No doctor actually ever said to me that things were in my head but some specialists certainly implied it. My parents have never acknowledged my EDS, not even my siblings, it's ignored. I've learnt to only confide in friends who take the time to understand.

Again, like you, the physiotherapist I attend is hugely knowledgeable about EDS. My GP practice always takes EDS into account when dealing with any new medical problem, I don't have to remind them.

Bendy, you can add me to the list of people you've helped through your blog. I benefit greatly from your honesty with yourself!

Shona said...

Hi Bendy,

Just discovered your blog. Your experiences sound terrible. I have Myotonic dystrophy (a kind of muscular dystrophy) and was diagnosed before my symptoms became severe. Many people with Myotonic dystrophy however have experiences similar to yours as the conditions has such variable symptoms.

You are doing a great job of raising awareness and helping other people. That's what I hope to do with my blog about trying to have a baby without passing on my condition.

Keep blogging! I'll be following.


Hun, so glad some one is blogging about this.
You probably know me by a different name, (Lou P) think you can make the connection.
All we can do is try to educate those that should know better. But not expect too much of them, as they are all knowing and all seeing and all dancing.
Bit poorly at the mo, so been crafting while I wait for another bout of surgery to fix some of my EDS issues, so not very active, but you can probably find my number on the HMSA if you want to chat, xx LOu