Hello everyone! (and new followers!) This is another one of those blog posts where I put on my serious hat ;) and focus all my energy on trying to find the right words to accurately make my point! Oh and I should probably start off by apologising for lack of blogging as well, but I shall defend myself by saying it is out of busyness that I haven’t updated in a while, and if I’m feeling well enough to be busy then it’s a very good sign!
For this post I wanted to talk about my weekend. So, I caught the bus in to town with my sister and went to Costa for drinks and cake. After that we had a quick nosy in a few shops before heading home. Nothing extraordinary about that really is there? I’m a twenty year old girl, that’s what we do. But for me, just this simple task involved so much planning, and thinking ahead, and taking in to account countless possibilities and eventualities. I haven’t caught the bus in three years. In those three years I’ve been bedbound, housebound, wheelchair-bound, all of which make using the bus a chore. It is only now that I feel confident in my health that I have been able to do something which most people take for granted.
So, what did I need to plan? Why did I need to constantly think it over and go though the journey in my head? The fact is, I can walk – a bit. Just a bit. I’m currently increasing my walking gradually, building it up so that I can walk further and further over the weeks and months. But the walking I can do is limited. So the considerations I had to make were as follows –
How far is the bus stop from my house?
Which bus would be less crowded, therefore less noisy?
Which bus would I be guaranteed a seat? Standing for the journey is a no-no.
How far is the bus stop in town from the coffee shop? Can I walk there and back?
Etc etc. There’s a lot to think about.
But one of my main worries was something that does concern me when, like I have recently, I go out without the wheelchair. My wheelchair has been a lifeline over the past year. It’s meant I can get out of the house and not have to worry about leg pain and exhaustion from walking. But more importantly, it’s a visible sign of disability. Now that isn’t something I always like, of course people are going to look and stare, but they automatically see you in a wheelchair and know that you’re disabled. That has its downsides of course; I don’t want to be seen as “that disabled girl”, “that girl in the wheelchair” or “that ill girl”. At the end of the day I am Sarah, I want to be seen for who I am. But having a visible symbol that shows people you may need assistance can be a benefit, without that, you wouldn’t know I’m ill at all.
M.E is an invisible illness. To most people, I look perfectly healthy. The only giveaway would be the bags under my eyes when I’m exhausted, and let’s face it, most people my age are out getting drunk and so that could easily be judged as a hangover and perfectly normal for my age. Of course I don’t drink, but you can’t see that about me either.
Because I have M.E, I get a disabled persons’ bus pass. A lifesaver if I’m going to take the bus more often! But I can’t tell you how worried I was about using it. Constantly going through my mind is what other people will think, the bus driver for instance, would they believe the normal looking girl, boarding the bus and holding up a bus pass? After all, I’m standing up, my legs look fine, I have all my limbs and I’m not using a guide dog or a stick so I can’t be blind. I don’t look disabled. Of course nobody questioned me; it’s my own insecurities that lead to thinking like that. But it’s still entirely possible that they were thinking it.
Luckily, the bus I chose is hardly ever full up. There are two other busses that go to the same place that are far more popular because they stop on the main road and they’re cheaper. But if I were to board a bus that was full, would anybody give me their seat? I can’t stand up for long periods, fact. But nobody can tell that from looking at me. Nobody would even think to offer me their seat. I would have to ask. And to be honest, the thought of that terrifies me. I’m too polite for my own good, and disturbing somebody on the bus to kick them out of their seat is something that I would be horribly nervous about doing. And just thinking about their reaction scares me too; would they let me sit down? Would they want to know why? Would I have to explain? Would they even believe me?
The symbol used to represent disability is always a person in a wheelchair. But understand that not everyone with a disability is in a wheelchair. And not everyone in a wheelchair is paralysed. Heck, walking isn’t even as clear cut as that! Most people presume it’s either something you can or can’t do, but take into consideration those people who just find it plain difficult. Disability comes in all shapes and sizes, visible or invisible.
Wherever I go, I’m limited by my illness. But I’m also faced with the barrier of people not knowing, or not understanding. I can only hope that people will give up their seat for me on the bus, or at the bus stop, or on a bench in town when I can’t walk any further. But it requires the public to be patient, and accepting, and polite. To understand that somebody who looks perfectly healthy may actually not be, and may need that seat more than you.
Don’t judge me by my illness. I’m Sarah. I like Harry Potter and the colour pink. I like reading and jaffa cakes and painting my nails. But if I explain my illness and my limitations, don’t doubt me or make my life any harder than it is. Be accepting, friendly and most of all helpful. Because hidden under this cloak of invisibility is M.E. Is me.
Thank you for taking the time to read this, I really do appreciate it! Expect more light hearted, happy posts soon as this week American TV channel ABC Family will be showing the first sneak peak footage of Deathly Hallows part 2, and that's bound to get me excited enough to blog about it! In the mean time, this weeks "thing worth sharing" - This Friday is Red Nose Day, so be sure to visit http://www.rednoseday.com/ and donate money to Comic Relief and raise money for people in the UK and Africa.
