Family and friends often don’t know what to say by means of support, often “stay positive” is the go to phrase in lieu of “get well soon” because, as I’ve said until I’m blue in the face, I’m not going to get well soon. When I get wound up about being told to get well soon, it’s not that I don’t appreciate the sentiment – at least these people recognise that I’m unwell. It’s just that I’ve spent over a year looking for a cure and hoping I’d get well soon and time after time I’ve been left distraught that the specialists didn’t have any answers or that the new medicine has left me even more sick. More often than not, the medical professionals who were supposed to help me and make me get well soon didn’t even believe me that anything was wrong. It’s really hard to comprehend the feeling of utter despair unless you’ve been there, but staying positive when faced with a genetic, incurable illness sometimes isn’t the most helpful approach because with positivity comes disappointment – of which there is plenty.
I try to keep a neutral, practical outlook. I find joy in positive events such as seeing friends or even a helpful appointment. I am quietly amazed when I find a drug that I’m not allergic to or when doing something fun isn’t immediately followed by the haze of fatigue and pain. I’m always happy to hear from a friend, even just chatting on messenger. I don’t live in hope of having a social life or that appointments will be positive. I generally expect that new medications will at best do nothing, but will usually have horrible reactions. I also try to remember that my friends have a lot going on in their own life and largely don’t have time to ask the sick girl with the weird illness how she’s doing, but it’s nice when they do. If you don’t expect great things, you won’t be disappointed. Please don’t confuse this with wallowing in self pity. A bit like trying to avoid extremes of positivity, I also try to avoid being too negative, though this isn’t always as easy because PAAAAAIN!
Of course I have a background, all-encompassing hope that I will get back to work and have a functioning body again, I’d love to have a family and to be able to be a good Mum – if my body will even carry a child. That’s a long way off and a lot of hard work away yet but it’s something to work towards. It’s just that in my day to day life, I try not to be too blindly positive given that disappointments really do set me back mentally and physically. Instead of telling me to get well son or to stay positive, I wish people would tell me that they’ll be in touch soon. Of course, if they won’t be in touch soon, that’s just another disappointment so don’t lie to me… Maybe just tell me that you hope tomorrow is better for me? Yes. That’d be nice. If you feel strongly about tomorrow being better, maybe ask if you can do anything to make it better. Sometimes I need more shampoo or would love some doughnuts and company, small luxuries make a massive difference.