Monday, 3 June 2013

Young and invisibly ill- becoming visibly disabled

Being a young person is tough- young people are often demonised and stereotyped, and I would question whether we have true freedom of speech- young people get called rude by old people all the time, but could we call a deserving old person rude? It would be a braver person than me who did! Young people are very misunderstood; a large proportion of society bases their opinion of young people on a small minority- and the rest of us suffer as a result.

Being disabled is challenging. It feels like the world wasn't designed for you. There are lots of barriers that you have to overcome and think of novel ways to work around. You encounter problems that the people immediately around you haven't come across before and can't necessarily help you with. You feel different.

The invisibility of some disabilities introduces additional difficulties. People don't know you're different, and the barriers to things you are trying to achieve aren't immediately obvious to those around you. If you want/need people to know there's a problem, you have to tell them- but being vocal about an illness you'd rather try to ignore and forget about can be tricky.

Put the 3 of these together and the likelihood of you and your situation being understood by the general public is pretty poor. Being young and disabled is a concept the outside world seems to struggle with. They expect young people to be fit and healthy. Make that disability invisible and those assumptions really complicate life. Walk (in great pain) onto a bus (or any form of public transport) and no-one would dream of offering you a seat, so you must endure the pain and balance difficulties of being stood up on a moving bus- normally with people bumping into you. I never sit in priority seats unless there are no other seats available because I know I'll have to offer my seat to the next perfectly healthy-looking, able-bodied relatively old person who gets on the bus, for fear of being glared at and judged. Would they cope with being stood up better than me? Probably, unless they too have an invisible illness.

I have just purchased a mobility scooter. My disability is therefore about to become immediately apparent to people. My illness will remain invisible but my disability no longer will be. There will no longer be the option to hide behind a 'healthy person' mask and hide my health problems from the outside world. I have used a wheelchair in the past, but not very often. I think a healthy- looking person in a wheelchair tends to confuse people, but I assume their assumption is that I have an injury- maybe I'm wrong. A healthy-looking person using a mobility scooter is likely to be even more difficult for people to get their heads round.

Using a mobility scooter makes it fairly obvious that you have a significant long-term health problem- you don't spend out all that money because you've stubbed your toe.. Most scooter users are old people, but that's because a majority of people with significant mobility problems are old. There is, however, also a significant proportion of the population, including me, who are young but struggle to get around, and getting around causes pain, increased symptoms, and is detrimental to their condition. Of course I have resisted the idea of getting a scooter. Of course I hoped I would suddenly miraculously improve, or at the very least the deterioration would stop. Of course when this didn't happen, I tried to ignore how bad things were getting. But when you've had several doctors say that your now-unbearable pain cannot be treated any more aggressively without causing increased drowsiness (which would be dangerous and unbearable in itself), you realise that you need to cause less pain to try to get things back under control- you have no choice but to face change.

This left me with 2 options: walk away from the life I have battled so hard for and retreat onto a sofa in front of the TV 24/7 with no foreseeable end to this lifestyle in sight, or get a scooter and carry on with life with slightly less strain on my body and see whether that helps my body to cope.

It was an easy decision really. Keep my dreams alive, reduce my pain, get my freedom back, be able to have more of a social life, less payback. Sounds pretty good to me. I searched the Internet for a scooter I'd feel happy using, and I've found it- I'll introduce him to you all when he arrives :) He's a bit different, and I like that. (At the moment it's a he, but I haven't decided for sure on a name yet, so gender is subject to change :P any name suggestions welcomed..!)

Am I disappointed to need to use a scooter? Of course.. Am I excited about the freedom I'll get by using my scoot? Yes! Am I going to face life head on, on wheels, and enjoy life to the full? Definitely!!

As a young person with an invisible disability on a mobility scooter, I'm expecting to get a few stares, and maybe have to face a few awkward questions, but that's not going to put me off from having fun, living my life, enjoying the freedom, and being me. I'll be the 21 year old zipping around smiling about my freedom- see you around ;)

Made me smile! :)


  1. I understand completely. I'm 24 and was diagnosed with severe fibromyalgia at 14, but have probably developed it sometime between 10 and 12 years old. If you ever want to chat, let me know! I know that it can be rather hard to find younger people who have to use scooters and whatnot. (I was in a wheelchair for part of high school, use a cane almost always, and used a scooter for a year in college.

    Feel free to email me: spooniejen (at)gmail (dot) com or DM me on Twitter (@SpoonieJen).

    Best wishes!

  2. My wife is 25 and also at the same conclusion. But our issue is the image. She gets embarrassed if people see her stick. She doesn't want to publically face long term deterioration. She would rather be invisible as able.

    She worries about me becoming "the guy with the disabled wife" instead of just me.

    Regards jason