Hello there, and thanks for stopping by! This is going to be a slightly unusual post today, but it’s something I’d really like to share with you all. As you may know, I have a form of cerebral palsy- mild spastic hemiplegia – and a spinal condition called Scheuermann’s kyphosis. These are long-term illnesses, with no cure, so it’s just about learning to manage and live with the associated pain and mobility difficulties to ensure I have a good quality of life. What has been really shocking to learn is that people assume they’re an expert of chronic illness and think it wise to give out tips and advice. I know, we’ve all been there, but it’s something that never ceases to amaze me! After all, I know my body better than anyone, and I know how my conditions affect my day-to-day life. I just thought I’d share a few snippets of advice I’ve often found funny, and usually unhelpful. Some comments are pretty hurtful, but I know some are simply well-meant.
Just to clarify, this is not a dig at anyone at all, and this isn’t intended as something to offend any well-wishers: I just think it’s helpful to realise sometimes things aren’t always what they seem and maybe we can all think before we say something to someone. You never know how your words are going to affect someone else.
‘Chronic illness? But you look so well! How is this possible!?’
I get this a lot. I really do. And whilst I can appreciate I do look ‘fine’ most days, it can be very frustrating to hear. Firstly, it makes me feel fraudulent. No, I don’t use a wheelchair, and even when I use my walking stick I appear able to walk normally and without difficulty. However, I spend the majority of my day in constant pain, and it’s really wearisome having to reiterate this. Secondly, there’s also the idea that if I’m dressed up nicely or have make up on, that I can’t really be that ill, because, you know, I’ve made ‘an effort’. Having chronic illness doesn’t mean you have no desire to feel good. I still want to look as nice as the next person, and when I feel like it I really enjoy wearing a little bit of lipstick now and again. It just goes to show that you never know what’s underneath it all. (oh, I also enjoy wearing a bright shade of red when I can…makes me feel I can take on the world, especially on bad days!)
‘Why don’t you try exercise? I’ve heard it really helps [insert illness here].’
I have couple of things to say about this one. What I do seem to notice is people often recommend exercise when they don’t really understand the condition. Last year, someone asked what cerebral palsy was. Immediately upon hearing this, they proclaimed that exercise would cure it. Funny…they didn’t know what it was prior to asking! Though I know exercise is fantastic, and I do exercise as much as I can to keep my muscles as flexible as possible (particularly in my hemi side) sometimes the nature of my conditions limits me in terms of exercises. Some I simply can’t do. Most others leave me in a lot of pain. People also assume that I don’t try/never have tried/that I’m unfit anyway. I happen to walk quite a lot, and considering walking is something I find challenging, (particularly with regards to the palsy) this can sometimes be very painful and very tiring. However, I always try. Sometimes I try too much, end up walking for miles (often in a bid to push myself) and subsequently suffer for it. What I’m basically trying to say is don’t assume exercise is the be all and end all. It can be brilliant, but think about it: if you’re in severe pain, would the first activity to spring to mind be a jog/some workout at the gym? No? Didn’t think so. Also, I’ll add here that when I was at school I still used to take part in PE and sports days despite my medical conditions and difficulties. One memorable sports day I volunteered for a long distance running race. At school, very few people knew about my cerebral palsy, but when I crossed that finish line (I came fourth out of eight) it was amazing. I’d done it; I’d also competed against people with no mobility or pain issues. It was possible, but I won’t say it didn’t hurt. I can still think back to the feeling of intense burning, crampy, sickening pain in my hemi leg that followed. The PE teachers gave me some little gifts to say well done: they appreciated how difficult it must have been for me and I’m truly grateful for that. It’s an experience I won’t ever forget.
‘Ah, get well soon!’
I feel bad about including this comment, because this is obviously well-meant and I appreciate the sentiment. However, it is difficult to explain to people that my conditions won’t get better. I have done this once or twice, and I’m usually branded a pessimist. I just call it being realistic: there’s no cure for either. They fluctuate on a daily basis. Yes, some days are better than others. But I will be living with these for the rest of my life, and I have (mostly) come to terms with that. I’m still sad I included this one but hopefully you’ll understand what I mean!
‘You’re just an old lady really!’
This really, REALLY annoys me. This reiterates everything I feel about myself. Some days I wake up in so much pain I feel like I’m years older. I can’t do normal household chores without intense back pain, I can’t go shopping without my body hurting and I can’t do ‘younger people’ stuff like clubbing without things becoming very difficult. Of course I enjoy a good dance every now and then, but it becomes extremely painful. The next day is an issue not because of the ensuing hangover (well, at least not the majority of the time) but because my body is tired…it’s tired of the pain. Don’t call me an old lady. It’s never okay. It’s one of these things that really get to me. Calling me an old lady basically confirms all my worst fears. I have a hard enough time thinking of myself in this way, and I’d rather you didn’t add to that.
‘You’re just lazy/milking it’
I just don’t even know what drives people to say things like this. I didn’t choose to have these conditions. I can’t help that sometimes I need rest and relaxation. Just try putting yourself in someone else’s shoes: do you think it’s easy living in pain every day? It is also well-documented that people living with cerebral palsy use more energy than an usual. It’s tiring stuff. The latter part of the above comment was one of the more hurtful things I’ve heard. When I was in school, I had to wear a spinal brace. This was extremely uncomfortable. I had to wear it 23 hours every day and the hour off was for showering/PE. Because it was hard plastic, it dug in everywhere, and I’d end up with bruised hips, itchy skin rashes and marks cutting into my skin from the plastic. It constantly forced my spine into an unnatural position, and this was painful. Wearing that brace was awful. I felt detached from my own life: it was like I stepped into a magazine and became someone else. ‘Will I have pain for the rest of my life? So, you mean it’s incurable? My spine might get worse?’ These were questions I found hard to ask and even harder to understand when I was thirteen. I was thrust into a world of painkillers, hospital checks, physio, pain management, and procedure after procedure. This was on top of my appointments for my cerebral palsy. Having people claim I was milking it was something I really didn’t need. How insensitive can you be?! The worst part is that a person who said this talked behind my back and told my friends I was ‘milking it’. At the same time, they’d be really lovely to my face and would offer to help me in any way they could. As you can imagine, hearing that was extremely hurtful, and I never really associated myself with them at all after that. I still avoid having to now, despite the fact we have mutual friends. Please don’t do this, ever. The last thing I’d ever want to do is feign an illness. If I had it my way, I’d be completely healthy and have nothing wrong at all. As it stands, I’m not. Don’t make assumptions because you don’t understand.It’s a comment that I haven’t ever been able to shake off since the age of thirteen, and I don’t think I’ll be able to forget it.
I know this is an unusual post, but I hope it has given you something to think about! On a light-hearted note, I have two huge bars of chocolate to get me through the last couple of weeks of essay writing. I know I can do this, but it won’t be easy. Wish me luck!
I’m getting closer to that finish line…