Published: 26/01/2023 Tags: Stories

I started getting treatment within 6 months of knowing what was wrong with me

A brief history of my route to diagnosis: –

Although hEDS is a genetic condition, and although I have had it since birth, I was 27 when I was diagnosed. Pre-diagnosis I was diagnosed with mental health issues when I was 13, and I was battling with those all my life, saying ‘this is physical pain’ and the doctors would say ‘oh no, there’s nothing wrong with you, it’s all psychosomatic, we’ve done all these tests and we can’t find anything.’

Because it isn’t just one thing that is wrong it is easy to treat each individual problem as a separate issue and it takes an experienced doctor (in my case 2 rheumatologists) to link all these individual issues together under one umbrella diagnosis. So, before my EDS diagnosis, I was suffering from many issues that were being treated as individual illnesses with no joined-up thinking or treatment.

Because I was told I had Munchausen’s syndrome, and I was making it up – when I had a baby at 23, and social services took her 12 weeks after she was born. I fought for 2 years but lost. She was adopted in 2005. When I received my diagnosis, in 2008 I was successfully able to appeal the fact that Social Services had not assessed me or treated me as a disabled parent. If they had assessed me as a disabled parent, then I may have been able to keep her. I would be given the support I was denied at the time, so I wasn’t given anybody in the house to help me with physical, practical day-to-day tasks. I was basically told that if I was not capable of doing those things on my own, then I wasn’t a fit mother and I couldn’t keep her.

Because I didn’t have a diagnosis, I wasn’t given a physical needs assessment. Even though I had an orthopedic surgeon who had written to them, and said that there were things wrong with me, they just ignored his letter.

During my teens I became very depressed, very anxious, I became anorexic, because that was the only thing that I could control. I couldn’t make people understand why I was hurting, so if I was starving myself, then I could understand why I was hurting. Your stomach hurts when you get hungry, so that was my way of controlling what was going on and it was easy. Because it took ages for my mum to get me out of bed, I could say that I wasn’t hungry at breakfast time, or that I’d grab something from the shop on the way to school.

From the point of diagnosis in 2008, everything changed – it was brilliant, I started getting treatment within 6 months of knowing what was wrong with me, being able to go to my psychiatrists and say this is this, and this is that. I was then told that there was no trace of the dependent personality in my system.

Because everything that was thought of as being dependent was now physical. The reason that I couldn’t do the cleaning wasn’t just because I was lazy, it was literally that I couldn’t stand up for long enough to do the cleaning. The hoover was destabilizing my shoulders and starting to dislocate. The chronic fatigue was making it impossible. So, he said to try and stop doing it. We went through everything that was wrong with me, one symptom at a time, and after 6 months I was de-certified. That’s one of my proudest things. There was no personality disorder left within me. There were small, tiny traits because I had been dependent on other people for so long. But I now know how to manage them and I’m not dependent on anybody.

I still have all these issues but now they are effectively managed as part of a single illness rather than as lots of individual conditions and understanding how they all inter-relate. It has made it much easier to be able to manage my condition as I can see how a flare-up in one of these issues can cause problems in another so can plan things to try to mitigate them, for example using a wheelchair reduces the risk of falling due to lack of balance which in turn reduces the risks of developing bruises I cannot explain or bleeding uncontrollably, etc.

Since I was diagnosed I have degenerated, the genetic issues have progressed and I have developed other co-morbidities, but I manage so much better now I am diagnosed. I am treated better by Dr’s and social services and actually given the help I need to be able to live independently and with a reasonable quality of life but still without my child.

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