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.
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