There are many times I feel like I could happily wish away my EDS, days when I’m in a lot of pain, having a lot of dislocations, or otherwise feeling very much under the weather as a result of its myriad symptoms.
When I think about it more deeply however I realise that without my EDS I would have grown up to be a totally different person! I have had many experiences and learned many things as a result of it that regular folks don’t have.
So, in no particular order, here are ten things EDS has taught me:
- There is always a way to do something! EDSers become very good at thinking outside the box in order to find a way to join in with an activity or get somewhere. If you want it badly enough, you will find a way.
- To treat my body with the respect it deserves. Rest is pro-active not time wasting! Over-doing it will only lead to a bigger crash later on, pacing is the best way of making sure everything gets done.
- I can be who I want to be. Just because I’m disabled doesn’t mean that’s the only label I can ever have.
- It’s OK to be different… Using a visible mobility aid or support and braces is a hard thing to get used to, people stare and ask awkward questions as they assume someone my age must have injured themselves – after all they couldn’t possibly be one of those “disableds”!
- …and that what other people think of you doesn’t really matter. In the grand scheme of things the only person whose opinion of yourself matters is your own. If you need that cane or wheelchair to help you get about it doesn’t matter what Mrs. Busybody thinks of you what really matters is how much more able you are as a result of using it and how much easier it is to manage your condition. The moment you stop judging other people and forget about other people judging you, you feel so much more free.
- I have a voice! And I mean literally not figuratively here. For me I was pretty used to standing out as a 6ft tall marfanoid woman so I had never had to speak loudly to be noticed. When I became a wheelchair user I had to discover an “out-door” voice that I’d never had before as many people seem indifferent to chair users.
- Never say never. I thought I would never go back to college or find a way to use my skills, now look at me! I’ve done the former and I’m doing my best at the latter.
- I’m stronger than I ever thought. I’ve been through so much! Operations, hospital stays, physiotherapy, all manner of tests, ongoing gastric problems, years of corrective therapy for my feet and yet I’m still here and still fighting.
- Who my real friends are. When you’re chronically ill you need your friends more than ever but they seem to magically fall away over the years. Many people just can’t deal with having a sick friend and stop calling or coming over. Your real friends will always be there for you, even at 3am in an emergency.
- How to prioritise. In order to get the best out of life I have to prioritise my activities and spread them out, I’ve learnt the hard way that I can’t do everything as much as I want to.
If you have a chronic illness, what things has it taught you?