Firstly, I wanted to apologise for my radio silence for the last couple of weeks! The nature of Ehlers-Danlos Syndrome is that it is a variable condition and these past weeks have been quite difficult ones for me. My hips have been particularly bad, which makes getting around almost impossible, which makes me feel pretty rubbish. I’ve been muddling through, but even getting time and energy to get a blog out was all a bit much. Onwards and upwards we go!
I’m back in the land of the moving and this week we are hearing from another person involved in the blue badge trial who also has EDS.
Q. How old are you?
I’m in my twenties – Put it this way I still get ID’d every time I buy alcohol.
Q. Can you tell me about your disability?
I have a condition called Ehlers-Danlos syndrome Type III, also known as Hypermobility Type. EDS is a congenital collagen disorder. Collagen is pretty much in every part of the body, so EDS affects everything. For me, it means chronic pain, particularly in certain areas like my jaw and my left shoulder. I get tired very quickly and take a long time to recuperate.
Q. What is your typical journey like (prior to the badge)?
It depends whether it’s peak or off peak. Off peak was usually fine, I get on quite far out of the city centre, so there are usually plenty of seats, and the same is true off peak going home. Travelling during peak time is another matter… I find it incredibly stressful, worrying before I even leave the house whether I’ll be able to get a seat.
Before the badge, I’d usually manage to get onto the tube but getting a seat was not usually an option. I didn’t feel confident asking for a seat, and part of the problem was even getting to the seating area – people are packed in like sardines, so it’s hard to move once you’re on. If I have to stand for more than about ten minutes, I can’t feel my feet any more due to circulation. This is not only painful, but also means that balancing becomes more difficult – not ideal on moving transport! My other problem is being able to hold on to something. I’m quite short, so have to stretch to reach the overhead bars, which means hyperextending (moving my joints out of their normal range) which is painful.
Q. What happens if you don’t get a seat? How does this impact your day?
It would mean that that day would become a “bad day”; I’d be in too much pain to concentrate properly and would usually have to come home early. I’m a student, so I’m lucky to have that flexibility, but it’s still not ideal.
Q. Are there any visual cues that would signal you need a seat (prior to the badge)? i.e. walking stick, crutches. How successful is this?
Usually no, I sometimes wear ‘tubegrip’ – a type of bandage – on my knee, but otherwise I look like a healthy twenty-something.
Q. How do you feel about the badge trial?
I think it was such a great idea. It’s given me the confidence to ask for a seat when I need one. There’s definitely room for improvement – I’m hoping for a more ergonomic and eye catching badge when it’s rolled out, but overall I think it’s been a massive success! It might sound a bit over the top, but it really has changed my life. I now feel confident when I have to travel at peak times, which I’d usually avoid like the plague if I could help it.
Q. How do you feel living in London with a disability?
I’ve only ever really lived in cities, but I think the frequency and quality of London services sets it apart. There’s still more that could be done – I find stairs really difficult, and so many places don’t have step-free access yet, for example.
Q. What do you think would most surprise those without a disability about the way yours affects you?
It’s made me a lot more efficient! I know that might sound counter-intuitive, but when I know I have specific tasks to get done, I plan them so I get them done in plenty of time. I always allow a buffer before deadlines, just in case, but generally now manage to arrange my tasks in a way that works for me. It makes me procrastinate much more efficiently too. So, when you’re preparing a meal, say a tomato sauce, you’d chop up all the vegetables and then get cooking, chopping up more as you’d need them along the way. This is something I find really difficult to do all in one go. So when I’m working from home, I’ll have breaks from my work where I’ll chop up an onion or peel a carrot. This also means that when I come to cook, I can just dump everything in the pan, as it’s all prepared. I get a break from my work, and rather than just watching Netflix or scrolling through Twitter, I try to get something useful done when I have the energy.
I hope you enjoyed hearing from a fellow ‘zebra’ this week. There are a lot of things I can relate to, including the renewed confidence I now have thanks to the ‘Please offer me a seat’ blue badge! It has been life-changing for me and I really hope TFL release it officially soon.
Right, I’ll be back next week (promise) with another blog.
P.S. If you or someone you know is suffering from a hidden disability, I would love to speak to you! Please get in touch via the contact form.