When I was first diagnosed with EDS, I never really thought that the very thing causing me so much pain could teach me some of the most important lessons I’ve learnt but nevertheless it has. After having EDS for 24 years now (you’re born with it, even if symptoms don’t show until later in life) I thought it was time to put some of the lessons I have learnt from my disability down in writing.
- I’m stronger than I realised
Not just mentally but physically as well. Yes, it takes a lot of mental strength to be able to tackle the challenges that a disability presents but on top of that, I have had to work hard to become physically stronger than I have ever been because the fact of the matter is that if I don’t ensure I am physically strong I won’t be able to stand up, let alone sit up and that is not an option.
- I no longer care what people think
There was a day where I would be mortified to go out in public with braces holding my joints in place, let alone admit that I have a disability and yet here I am. I’m never going to get better so I might as well look after myself regardless of what people think and if that means using my blue badge because the pain is too great to walk a further distance than I need to then so be it.
- I can’t do everything and that’s fine
I’ve come to accept that my disability means I can and never will be able to do certain things. I will not be able to hike up to the Hollywood sign when I travel to LA like I always dreamt of but that’s okay, I can still go and see it and I can still enjoy myself.
- There is always something I can do
Following on from the previous point, there may be a lot that I can no longer do but there is still so much I can do and for that reason I will celebrate. I can still swim and do pilates, I can still bake (albeit, with adaptations) and most importantly I can still work and travel.
- Live in the moment – do things whilst you still can
I’ve learnt to accept that I will never get better (unless someone finds a way to cure EDS and reverse all of the damage it has caused my body) and I will most probably only get worse, therefore I will make sure I make the most of every single moment I have (so be prepared, I will take photos at every opportunity!)
- Don’t take your family or friends for granted
I could not survive without my friends or family. From my mum who drives to Minor Injuries/A&E constantly to check the status of yet another dislocation/subluxation to my friends who check in on me via text and are always there to vent to.
- The value of true friends
learnt this lesson pretty early on in my health journey. When I was first diagnosed with ME (before EDS came along) I was in my last year of school with a large group of friends. I became ill and almost all of my friends deserted me. Whether this is because they couldn’t be bothered to understand or because they just simply didn’t know what to say I will never know but I do know that I am better off without them. EDS has taught me the true value of friendship and I would not be able to cope without my true friends. When I first started really suffering from the symptoms of EDS, I was lucky enough to live with one of the best friends I could ever ask for. She was there every step of the way and still is. From making me banana smoothies and leaving them in the fridge with a note on days I could barely get out of bed, to reminding me to eat when I was too exhausted to even think. I’m lucky to have some incredible friends who don’t treat me any differently but are there whenever I need them, even if I don’t think I do.
- It’s okay to be afraid
I live with a condition where nothing is guaranteed. Yes, I can walk now but whether I’ll be able to forever is unknown and of course I’m absolutely terrified of what might happen but that’s okay, it’s normal.
- It’s okay to ask for help
This was a steep learning curve for me. I have never been one to surrender and ask for help but EDS has meant I have had to learn to. There are days I can’t even lift the kettle because my hands are shaking so much holding a kettle full of boiling water is a danger to my health, therefore I have had to learn to ask for help whenever I need it. At the end of the day, it’s a choice of having a minor dent to my pride or causing myself more health issues than I already have.
- Do not take life for granted
You never know how long you have, I have witnessed this first hand. Do not delay in doing what you dream of. If your dream is to travel the world, go and do it now whilst you still can.
- Life is too short to be miserable
Similar to above, if you’re unhappy in your job/relationship etc. get out now. Life is so short, don’t spend it being miserable – go and do what makes you happy!
- Laughter is the best medicine
I often get asked how I can laugh about my disability and get comments about how strong I am. I laugh because I can – my sense of humour is the one thing EDS cannot rob from me so I cling to it. And to be honest my life with EDS is pretty laughable – I mean who else can say they dislocated their knee by sitting on the sofa?
- Resting does not mean I am lazy
As someone who is quite stubborn and doesn’t like to give in, it was pretty hard to learn to pace myself so I ended up learning the hard way. As much as I would like to, I simply cannot keep going all the time or I will end up crashing completely. I’ve learnt that it’s better to take an hour or even a day to rest rather than keep going for days on end and have to take weeks off to recover.
- You cannot have the good without the bad
This is pretty self-explanatory but the bad days make me appreciate the good days so much more.
- To listen to and trust my body
After 24 years of constant health issues thanks to EDS, I have learnt to listen to my body. I know when I am about to come down with an illness as my body will start showing me signs up to a week before and after years of fighting it I have learnt to listen to it and start slowing down prior to being hit with a virus etc.
When you’re in your twenties and have to juggle constant health appointments, medical expenses and daily medicines you learn to be pretty responsible pretty quickly.
- It’s okay to have days where you want to be alone
When you’re in constant pain 24/7 you get days where you just want to be on your own and that’s okay. There are days where I come home from work and can spend the whole evening with my family and there are other days I come home, jump straight into a warm bath and into my PJs and am in bed by 6:30pm.
- It’s okay to show your pain
No one will ever be able to understand what you are going through if you don’t allow your pain to ever been seen.
- It’s okay to grieve for the life you used to have/the life you should have
Life is different now, I can’t go out and get drunk like other people my age, I have to rest constantly and can’t walk for more than a couple hundred metres before having to stop and rest. One of the biggest things I have learnt on this journey is that it is okay to have days where I grieve for the life I used to have.
- Don’t take things for granted
Before my symptoms started showing themselves I never even thought about the ability to walk, cook, work etc. However, after the last four years I cannot even describe how grateful I am for the ability to still do those three things and more (well most of the time).