Making our invisible, visible - Ehlers-Danlos Syndrome (EDS) awareness month
You don’t look ill, you look so young
I am now 54 and I don’t look it. I am not boasting but maybe the only benefit advantage I have of HEDS (Hypermobility Ehlers-Danlos Syndrome) one of the classifications of EDS, is that my skin is thick and soft/velvety. During my younger years I was involved in several accidents and each time my skin healed amazingly well despite being told that I would be scarred for life. Unfortunately I did not get advice or support for my joints. I could always do ‘party tricks’ along with my sister sitting moving our joints backwards.
During my adolescence, I was very flexible and bendy but only fractured my collar bone and wrist when falling down. In my 20's I was putting on my coat and my whole shoulder joint dislocated moving forward in front of my chin. I was in shock and couldn’t work out how I couldn’t breathe properly. After 10 mins of pacing and trying to breathe, I sat down again and the motion moved my shoulder back into place. What a relief. When I saw a doctor about 2 weeks later it was my first experience of seeing a professional look at me with disbelief.
This was the first of increasing and continuous subluxations (not full dislocations but uncomfortable), sometimes full dislocations and pain. After having children I had increasing lower back pain, knee pain, hip pain as if I had no right leg joined to my body for a while until it went back in, ankles giving way, shoulder rotator cuff and torn tendons, adductors torn muscles and hip impingement, chronic trochanter bursitis, itbs, rib slippage and the list goes on. The injuries mainly wax and wane, so when one injury is acute the others sort of go into the mix and then as the acute injury subsides the chronic ones decide they have had enough trying to hold me together and react. This is totally my perspective of course.
After having my children, one of whom had a learning disability and medical conditions I was full time looking after them. Unfortunately my marriage ended and I was a single full time Mum and had to find employment, I started studying and ended up with 3 qualifications/degrees. I wanted to help other parents and children with autism. I had increasing pain, muscles spasms, sciatica and tiredness but despite checking with the medical doctors was told ‘had I tried stretching?’
I did everything I could but needed the first 2 knee ops, that was when I was told I was very bendy in the knees but no other advice. Later my knee ligaments gave way but I continued working as I was told others had had my op. with no problems and some people continue to work with only one leg. I am sure that’s true but not useful for me.
The issue with seeing medical practitioners who either are not educated in the condition or closed to the conditions is that we are not believed. After dislocating my ankle and finally getting a referral I was told by one medical professional that ‘it was not possible to do what I did just by walking across a car park with no trauma’. She also said that we all get aches and pains at my age! After that I felt no one believed me, I didn’t know anyone with my issues so I thought that maybe everyone does just work with the pain.
In 2010 I was diagnosed with hypermobility but no other help and turned down for any disability payments. Apart from looking after my children and paying the bills all my money went on private physio, osteopathy and chiropractors and deep tissue massage to help the spasms. I had to give up any hobbies I had and of course lost my social friends. In my last job I tripped on a pavement and damaged my knee. My leg swelled up but I had just started a new job so tried to continue on. I told the employer that I needed reasonable adjustments. I did not work in the office everyday but around 2-3 days a week and it was a long 21/2 hour commute. Because both legs were affected I could be limping with a crutch on one side and the next week be using a crutch on the other side and people would comment that ‘had I forgotten I was limping on the other side last week?
I was diagnosed with chronic fatigue syndrome and fibromyalgia and I found the pain unbearable at the end. I had to stop working in 2015 and claim PIP. I was diagnosed with EDS3 now hEDS in 2015 and discharged, also secondary MACD and chronic allergic rhinitis and idiopathic dematographic urticaria, this all has to be managed by primary care who often do not have training in this area. Late diagnosed with autism in 2016.
During my career I met many people who didn’t understand autism and that was fine as long as they were willing to learn with an open mind, that includes professionals and lay people. What I find unbelievable is the lack of knowledge and willingness to believe in EDS. I think it is shame that perhaps with support earlier on I could have carried on with my career helping others instead of being housebound a lot of the time. I am volunteering as coordinator for EDS support UK to improve practise, knowledge and understanding. This involves working with the MSK department, CCG and teaching hospitals, media and social media raising the profile so we are not mis or under diagnosed and receive the right support for life.
Ehlers-Danlos Support UK have three main aims as a charity:
1. To provide support to people affected by EDS
2. To educate and raise awareness
3. To support research to improve awareness
This is done through online support, a helpline and support groups across the UK. We aim to educate and raise awareness in both the medical community as well as the general public and we support research to impact diagnosis and treatment for those in the EDS community. You can see their website here.
Do you have any experience of EDS or hypermobility? Do you have a hidden impairment? If you have any comments or questions, let us know below.