Tuesday, January 31, 2012

(Not-so) Invisible Illness

The other day I was getting on the bus (to ride the three stops from the shop to my house because I was too tired to walk) when the bus driver leapt up and grabbed me because he thought I was falling over. It was quite alarming, because I wasn’t falling over and had no idea what he was doing, but he meant well and it was nice to know that, had I been falling over, he would have been willing to help. After realising his mistake, he then took my card and tagged on for me and waited until I’d sat down before starting off. When I was getting off the bus (three stops later) he looked worried and asked if I had far to walk from there. I didn’t – the bus stop is just around the corner from home – but again, it was nice of him to check (not really sure what he was going to do if I did have far to go though?)

I was thinking about all this later. Part of me was happy to know that there are nice people out there willing to help out someone they feel is in need, but the other part of me felt sad and I wasn’t quite sure why. I, like most people with invisible illnesses, am far more used to the old chestnut: “But you don’t look sick!” Or when they see my crutch: “So what have you done to yourself?” I’m so used to people not believing me, or simply not realising, that it felt really strange to have someone notice I was struggling just by looking at me.

As I’ve got sicker, it’s become far more visible. While I’ve walked with a crutch for a long time, it’s now quite obvious that I really need it. My legs don’t always do what they’re told, and get a bit wonky-donkey when I’m walking. Tremors are hard to hide – in particular the new fun symptom of my head bobbing – and of course rashes, being pale/green and weight-loss tend to be fairly noticeable.

After a few minutes of moping over all this, I realised I didn’t care!

A few people have looked at me strangely when my head starts bobbing, but once I explain that I’m not really emphatically agreeing with them they don’t mention it again. A few days ago, I was stressing about going out to dinner because my tremors were really bad. Then I realised, no-one is going to laugh at me (and if they did, they certainly wouldn’t be the kind of person I want to hang out with!)

Being sick – invisible or not-so-much – is hard, and the majority of people get that. The ones who don’t, either just have no idea and will probably change their tune once they understand a little more about invisible illnesses. The ones who do understand about invisible illnesses and still don’t get it? Well, maybe I just don’t hang out with them :-)

Little Miss Autoimmune

Friday, January 20, 2012

Limbo Blues

One of my friends and I often talk about being in limbo. Most people have the idea that when you get sick, you either get better or you die and, though it is a blunt way to put it, for a lot of diseases this is true.

However, with many chronic illnesses, you may get better, but you don’t always get “better” and (all things going to plan) you don’t die either. You’re in limbo.

Limbo sucks.

When you’re in limbo, people will try to understand, but realistically when you repeatedly cancel plans, or straight out say no to things, or don’t meet responsibilities, they’re going to feel let down.

I sometimes wonder how much to tell people. I understand that it probably feels like a cop out if I tell people “I’m just not feeling up to” doing whatever. If I’m vague about why I’m not doing something, people may feel like I’m using being sick as an excuse. On the flipside saying “sorry, I’m not coming because everything I’ve eaten today has gone straight through me,” is more information than most people need. Often I will say no to things if I think there’s a possibility of people having to look after me. However, if I tell people this, their response is often to assure me they don’t mind. In theory, they probably don’t mind, but in reality if I fall and can’t get up, or have tremors so badly I can’t walk, or start vomiting and/or passing out it’s going to be a different story. All through my teenage years, my friends had to be prepared for the fact that every-so-often I would pass out. It wasn’t easy for them, and back then I could still get myself up off the floor easily. I want my friends to be my friends, not my caretakers.

Similarly, when people ask me how I am, I’m not sure how honest to be. We’re so conditioned to put on the “I’m fine” face, that’s it’s hard not to even when you know it’s a question not a greeting. Most of the time, making a joke of things – saying “today was decidedly lacking in awesomeness” instead of “I actually feel really awful today” – is easier. Many of my friends know me well enough to ask: “but how are you really?” if they want an honest answer, but even then it’s hard. Sitting there listing everything that’s wrong is not going to make me feel any better, and it’s a sure fire way to loose friends and alienate people.

Lately I’ve been struggling with the blues. I’m not going to say depression, because I don’t think I’m really “depressed”. This doesn’t mean that I need cheering up though. I’m okay with being a bit down. Frankly, I think it would be a bit weird if I wasn’t a bit down. Yes, I’ve been sick for years. In fact, I can’t really remember a time in my life where I had “good health,” but lately I’ve been overwhelmingly sick.

It’s probably kind of hard for people to understand, since if you saw me three months ago (or even three weeks ago) I wasn’t that bad. Things have got worse much quicker than I thought possible, but I’ve repeatedly told people “I’m okay” so they’ve every right to be confused.

Right now, all my energy is going into trying to get better. I don’t really feel like doing much else, and I know that that may result in people feeling down. Please bear with me. I will get better. Bar cures for all my diseases being found, I’ll still be in limbo, but it will be the old limbo. The one that still sucks, but at least leaves me with the energy to leave the house occasionally.


Little Miss Autoimmune