I’m not going to be specific to any particular illness here as I feel that this covers a very broad range. I myself have been in this position for the past two and a half years so this is of course, from my own point of view as I have been and am still living it.
Living with any ongoing illness is going to be hard, it changes the way you live your life whether you want it to or not. What makes it ten times worse and much harder for those on the outside to understand is when that illness is invisible. If I had a £ for every time someone said “but you look really well” I would be filthy rich by now! It seems much harder to try and explain to friends and family about why you can’t do the things you used to, why you aren’t better yet and how come you look ‘normal’. It has crossed my mind that sometimes I’m not believed but I can’t control other people’s opinions so I try not to think about it too much. After all, it’s much easier for people to ‘get it’ if you have something obvious like a broken leg. I’m very fortunate to have brilliant friends who are always ready and willing to bail me out if I need help with anything, some have been helping out with school runs for years! I’m also very lucky to have one particular friend who is in the same sort of position as me health-wise and we often use each other to sound off and have a little moan about how crap it all is. I think if I had the same conversation with my other friends they’d be extremely depressed by the time I’d finished and would avoid me like the plague ever after!
OK, so let’s talk about your social life. Ha, what social life!? Something that I have found is that people stop inviting you…to anything. If you’re unlucky enough to be stuck within the same boring four walls for most of every day, day in day out because your illness just will not allow you to be buzzing around like you used to, you’ll know this one. Everyone suddenly assumes that it’s not worth inviting you to anything because you’ll be too tired or too unwell to attend. It’s not their fault, they don’t realise, and if you’ve never been in that position you really cannot imagine what it is like. Can I just say, if you know someone who has a chronic illness please invite them to everything, even if they say no most of the time. There really is nothing worse than being excluded on an assumption, we might say no but we still like to be asked. Even a quick drink down the local and seeing some different faces can make the difference between a crappy week and an awesome week. To everyone on the outside it seems minuscule and unimportant but to someone who’s going absolutely stir crazy at home it’s a huge thing! It’s mentally uplifting and breaks up the pure evil monotony that attaches itself to your very existence when you’re unable to live life like you used to. I have found that nobody gets this, even those closest to me. They may say they understand what it’s like but they really and truly do not. They can’t unless they’ve lived it. Again, this is no fault of their own, it’s just the nature of the beast.
I believe that there is a period of mourning when your life suddenly changes, mourning for your old life and how things used to be. There are too many emotions to experience, anger, frustration, self-pity, asking “why me?” Well actually, why not me? Getting used to a ‘new normal’ is damn hard especially when the mind is still super-willing but the body just doesn’t want to know. I look at my friend’s social media statuses when they have a headache or a cold which they’ve (as usual) self-diagnosed as flu and I think to myself “you have no idea, no clue at all” and I envy them their headache or their cold. They’ll be back to normal next week, I won’t.
So, sometimes you inevitably reach a point where you’re a bit more frustrated than usual and think ‘stuff this’ and you unwisely try and go back to doing things like you used to. I’ve tried pushing myself more times than I care to remember but the results are sadly always the same. Mind over matter doesn’t exist in this instance I’m afraid. Your body just can’t do what it used to no matter how determined the mind. I have found a wonderful outlet for my personal frustrations though in photography, something I’ve always loved but find that I have more time for these days since having to give up work. Of course I always spend too much time (and money) on Amazon trawling for snazzy new camera accessories but it keeps my mind busy and it’s something I can do at home at any time. I do believe that it is important to have that outlet and I’m actually building up my skills as a photographer at the same time.
I see photography as my silver-lining, every cloud has one right?