Nearly everyone knows I’m ill. It’s as if I’m a celebrity or something. All of my friends, ex-colleagues, acquaintances, neighbours, friends of my siblings, friends of my parents… nearly everyone knows I’m somewhat out of action. Even most of my friend’s friends know of my ‘situation’ but there is still the lesser-spotted stranger who is none the wiser.
On the rare occasion that I come across someone who doesn’t know of my new found status as the local VIP I become a bit flummoxed. Do they not know who I am?! Where have they been?! I’m practically famous for goodness sake!
Meeting new people for the first time is hard. It’s hard to stomach that this is the person they meet; this version of Anna. (Yes I know you all think I’m still the same but I don’t feel it.) I wish they were meeting the old Anna but I’m learning to love and accept this new version of myself. It is also hard seeing people for the first time in years. I don’t love that they see me looking so rough. Everyone wants their old school friends to think how far they’ve come since they last saw each other! That really can’t be said about me and my life can it?! “Christ she’s let herself go!” would be the first thing that came into my head if I were to meet myself for the first time since leaving school. Of course appearance is a big part of this but I try my hardest to rise above it and keep things in perspective. Afterall no one looks their best when they feel like utter…poo.
On the rare occasion when I’m in a social situation with someone I’ve just met, the small talk can be tricky. When faced with the “What do you do for a living?” type of question I am always at a loss as to how to answer. Answering that I’m currently in “rehab” will no doubt leave people wondering what on earth it is that I’m in rehab for. They might casually try to check my arms for track marks or leave wondering whether I’d give Lindsay Lohan a run for her money on a wild night out.
Alternatively I could answer that I am an unofficial TV critic or pyjama tester for some well known store. Alas I usually just turn into a bumbling fool who has no idea whether to be brutally honest about what I do day-to-day or just skate over the topic without going into any deep and profound response about embarking on a journey to find the true meaning of life. In the past I have simply answered that I’m currently out of work and then promptly change the topic of conversation.
While I may not be all that confident in the presence of people who don’t know of my exciting secret life as a mostly-housebound simpleton, I’m not overly shy either. I make jokes about having had an extremely productive day in which I managed to shower AND boil myself an egg. Goodness me, how wild and daring!
Jokes aside, it does hurt deep down. What makes me sad is that I feel so far removed from these ‘normals’. Every (and I mean EVERY) aspect of my life has been affected by chronic illness, from the films I watch, to the clothes I wear, to the amount of times I need to go to the toilet in the space of an hour. I join in with conversations and laugh along but I always leave feeling like I was out of my comfort zone. Only once have I broken down in floods of tears when catching up with people and hearing about what they’d been up to; searching for jobs, interviews, reunions, shopping trips…I had absolutely no news other than that I’d been confined to bed for the last few days. Who wants to hear that?! People rarely know how to respond.
A couple of examples:
The window cleaner knocked on the door recently and I was speedy enough to answer the door before she came to the conclusion that there was nobody home. She chatted away to me (which can be exhausting in itself) and then noticed Mr Walking Stick. “Oh dear. Been in the wars? Sports injury?” Umm, not exactly. (Is it such a foreign concept that a young woman might need a mobility aid? It seems so normal in My World now…) My reply was something along the lines of “I wish!” and I muttered something about chronic illness. Her response made my day. Instead of the uncomfortable attempt to avoid eye contact and change the subject she said how sorry she was to hear that. She wished me all the best. Her kindness and friendliness stayed with me for the rest of the day.
At the beginning of this year I met some friends of a friend. I don’t think they knew of my celebrity status as the local cripple. Towards the end of the evening I started to ‘crash’. I had to have help holding my glass of water, be helped into my shoes and coat and I was rapidly losing the ability to speak let alone join in with the banter and conversation. I left quickly and forgot to say goodbye to everyone. I was just so out-of-it, feeling incredibly drunk because of the extreme exhaustion. The next day I wondered what those friends of a friend must have thought. How rude of me not to say goodbye. They had probably twigged earlier on in the evening that I was a poorly person but they maybe thought it was just a case of the flu or a 24 hour bug. I was embarrassed at my apparent rudeness but also that these near-strangers had seen me like that. Perhaps they just thought I’d had too much to drink. Perhaps they didn’t give it a second thought. Perhaps I worry too much…
M.E. myself and I 
I can so totally relate to this post. When it comes to people I used to know, I tend to just avoid them unless I feel comfortable with them, as, like you said, I don't want to deal with the judgement of 'letting myself go' and not achieving anything.
When I'm asked what I do, I tend to sort of fluff the answer – often leading with 'I'm disabled but still doing some writing now and then' and then quickly change the subject to something simple or easy to talk about.
As for what people think of me at parties – well, it's so long since I went to one that wasn't just my closest friends, that honestly I don't know how I'd react. I do know that I get 'dressed up' (you know put my make up on) if I'm going to leave the house – after all, it only happens about once a week and I want the world to perceive me as normal, even if I am on a scooter.
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Hello Anna!
I am delighted to have stumbled across your blog, it is superbly written!
A friend once suggested that when interested in the lives of others we should not ask “what do you do?” but “what do you like to do?”. Besides, what people enjoy doing is what really makes them who they are. However, if the dreaded question should crop up I think you should explain that, amongst other things, you are a motivational/witty/heart warming writer brimming with talent.
Much love to you and the fam xx Ronnie
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