Frustration. It's annoying isn't it? That feeling of restlessness, of not being satisfied, feeling like there is something missing and more to the point that there is something you should be able to do about it.
If you've ever been unwell for longer than a week I think you'll probably have an inkling of that frustration is like. As someone who is chronically ill I think I can speak for many, if not all, of us and say that frustration is a daily battle.
When you physically cannot put your clothes away, wash the dishes or sometimes even dress yourself, it is very frustrating. Getting to the end of the day and having been unable to achieve more than a shower and heating up some soup is frustrating (and yet you are still so tired that you can sleep all night, but wake the next day feeling like you haven't had a minute of rest). Not having the energy to have a conversation on the phone to sort something out or having brain fog so heavy that you can't even put together an email is really sodding frustrating! Waking up and feeling pretty good, but knowing you have to rest all day because you have dinner plans and if you do something now you will be in too much pain and too tired to go is really goddamn frustrating! Dislocating your shoulder by taking off a top - have you guessed what that is? Frustrating!
We live in a society that on the outside of things seems to value a person by their measured successes. From infancy we celebrate achievement of expected milestones. From taking your first steps into the smiling arms of your parent to losing a tooth for which the tooth fairy will reward you with money. The moment you go to school you are bombarded with badges and awards, merits and gold stars. Constant examinations throughout your academic career will measure exactly how well you are doing compared to your peers. Your parents will boast of your prowess in this or that, perhaps little Dennis is the star of the team or little Anna won first prize in the Maths competition.
Even upon entering the adult world, these value judgements don't stop. One of the first questions people get asked in adult conversation is "What do you do" (example - I was being canvassed by a local politician, who upon finding out I wouldn't be voting for him went ahead and asked with a knowing look "what do you do" immediately thinking he could classify me in that way. It was a shock when I told him I was disabled!)
Unfortunately since leaving school I have consistently been unable to achieve the expected milestones of the society that I grew up in. I was unable to complete my degree at university. Not just once, or even twice, but three times I had to leave due to being too physically and mentally unwell (in case you are interested I was studying Philosophy, Politics and Economics) and at this point we still didn't really have any explanation for what was wrong with me. Although terms like ME, CFS and Fibromyalgia, they came with a whole other load of unknowns and to top it all off, nobody could see that there was anything wrong with me. When I got out the house it wasn't like I had a broken leg (although I now know may well have subluxed/dislocated without realising!), there was never anything tangible to hold onto.
Before I went to university I was lucky enough to gain a place on the Deloitte Scholars Scheme. For 7 months I worked full time in the big city, and I honestly thought that's exactly where I would end up. The Partner in my office had already offered me a job when I finished university and I thrived off the environment. Its amazing how in a couple of years that changed so much.
I am finally - at nearly 27, 12 years after symptoms started affecting me - starting to get the support I need to help me live a relatively normal and independent life, but I've had to fight for it every step of the way. Even to be diagnosed I had to push for every appointment, convince them of my need for every referral and deal with many, many disbelieving doctors. Between navigating the NHS and DWP, and learning to live with and manage my symptoms it's no wonder I haven't been able to work! I can say that now, but it doesn't stop my frustration at feeling like I'm not achieving. Like I'm not contributing to society or that I'm not doing what is expected of me. I'm not proud of the fact that I am on benefits. I have spent my twenties dreading the unavoidable question at a party "what do you do?" and I've spent far too much time coming up with answers in advance, preparing myself for inevitable feeling of worthlessness that comes with saying you are unemployed.
For me, the biggest part of the last two years (and sorry if I'm repeating myself) has been coming to terms with my disability. The way that has happened has been learning about what is going wrong with my body, trying to get my head around how damaged collagen produces such a good variety of symptoms. It's meant that I've finally been able to understand why I need to rest so much, learnt to give myself a break and make changes that make my life easier. For me, this kind of peace of mind only came with diagnosis
I can't know if being diagnosed at 15 when I started showing symptoms of EDS (or as a baby when my entire gastric system didn't work, or as a 10 year old with Henoch-Schönlein purpura which is an early indicator of a connective tissue disorder) would have made a difference, but I can't help but feel that it would have.
When you hear other stories of people with EDS, my decade long wait for a diagnosis is not unusual, if anything I'm lucky I wasn't born a generation before as you hear of people in their 40s and 50s only just being diagnosed. When you speak to doctors, half of them don't even know what EDS is and ask you spell it out for them. There are only a handful of specialists in the country, half of which are private and it isn't unusual to wait more than a year for appointments and testing.
May is Ehlers Danlos Sybdrome awareness month. The idea is to build (can you guess it?!) awareness of EDS so that in the future people won't have to spend a decade waiting for a diagnosis, get access to support and actually live a full life again. You never know, perhaps one of the people who hears about EDS this month will eventually find the cure. So I have a favour to ask of my readers. This month, I ask you to share something on social media about EDS. You could link any one of my blog posts (even a recipe, it doesn't have to be an EDS related one), or perhaps this buzzfeed article. You could go onto the EDS UK website and download their social media pack, or maybe just tweet that May is EDS awareness month.
I honestly believe that it is awareness and understanding that can help us get on top of rare diseases like this.
I've listed some links below if you want to know more about Ehlers Danlos syndrome and last but not least thank you in advance to anybody that actually feels moved enough to share something about EDS!
Ehlers Danlos Support UK
http://www.ehlers-danlos.org
NHS Information about EDS
http://www.nhs.uk/conditions/
How to get involved with EDS Awareness Month
http://www.ehlers-danlos.org/get-involved/may-awareness-month-2014
