I don’t really know how to start this even though I’ve been wanting to write it for quite some time now. There; I’ve started. Do you know how it feels to be in your own world, not by choice but as a result of an invisible illness that isolates you from the ‘real’ world? I do. Do you know how it feels to spend every day hoping that maybe soon you could be with someone again in their world as an ordinary person with wonderful friends? I do. Do you know, then, how it feels when you actually take the pretty brave step of daring to invite them into your world? Only to find that you have no idea what to do now you have them there? Guess what? I do.
I must say that I do not have ‘anxiety’ or any other problem as far as ‘mental health’ goes. But, like most people, I do get anxious. Recently I’ve been stuck in doors a lot more than is healthy. This hasn’t been good for me. I’m now finding that getting things ready for an outing is stressful, car journeys are stressful, waiting for people is… Stressful. All the tiny decisions, little stresses at the start of a day are magnified for me… By ME. A little decision that a healthy version of myself would barely be able to recall making could drain me so much that I feel like sitting down on the floor and refusing to move again. Ever. Unless it’s to lie down, obviously.
So how on earth am I supposed to live in the ordinary world? While friends are wondering who someone’s latest boyfriend is I’m worrying about if I will be lucky enough to get a nice consultant for my next appointment. How can I be expected to turn off all those thoughts that spin around in my head when I’m alone, to just forget all the worries and stress?
I know what I’d be thinking right now if I was reading this: You don’t need to forget it- explain how you’re feeling to them so that they can understand- maybe even help! It’s not as easy as that. Then again, when is it?
It’s not so much that I don’t want to ‘burden’ people with my troubles, more that I don’t want to spoil things. Deep down I still hope that one day I’ll be ‘normal’ and it is so hard to cross all the normal things I do have over with the totally abnormal hell that I often live in. In times when my health has been a little better I’ve built up hobbies and friendships, normal things that I can escape into when things get tough; only it doesn’t work like that. My body never says “Okay, let’s make a deal! You can feel like death all weak apart from five hours that you can spend between friends and study. Happy?” I used to be able to cope for some time without any interferences as long as I was prepared to deal with the consequences later. Now? I feel like I need to sleep before we’re even past ‘Hello’. And, funnily enough, it’s ME that’s causing all the problems.
What I’m trying to say, but don’t want to accept, is that there is nowhere to hide. Your body and illnesses do not take any notice of important dates or times. It’s not a job. You can’t go on paid leave and, trust me, you’d have already used up all your sick days. I talk about the healthy world as the ‘real’ one but it’s not because I am real too. Until I learn to see these two ‘worlds’ as connected and very very real, all I’m doing is relying on a fantasy to get me by. My ‘real’ perfect world is about as unreal as it gets. Maybe that’s why I find it so hard to put a little honesty and truth about my illness into it.
I’m beginning to realize that keeping friendships in a little bubble marked ‘PERFECT, NO CHRONIC ILLNESS ALLOWED!’ isn’t going to help matters at all, only make me feel more isolated. Now it’s down to balance. And a choice: risk loosing anyone who will shy away from their former ‘friend’ in a wheelchair (or who say “OMG you poor thing, get well soon!!”) or? Or be honest and confront the little -or not so little- voice inside of you screaming “YOU DON’T WANT ANYONE TO NOTICE!!! CARRY ON AS USUAL (even if that means totally exhausting and hurting yourself) AND ALL WILL BE WELL (apart from you, who will be very unwell indeed)!”. I guess I’ll just have to see if I can find the strength to take the risk.