People regularly tell me to stay positive – a bit too often for my liking, to be honest. Their judgement often stems from them having seen a Facebook update and assuming that this is exactly how I feel all the time. Well, they are very freakin’ wrong. I know it comes from a well-meaning place, but surely most intelligent people know that the everyday inspirational meme is not aimed at people living with an incurable, painful, debilitating and poorly managed condition? Annoyingly, it almost always comes from someone who knows someone who has had in illness and they just assume that I will react in the same way as their friend/family member WITH A COMPLETELY DIFFERENT ILLNESS seemingly did. Urgh.
J’s family have got it so, spectacularly right. On not one single occasion have I been made to feel as if my pain, illness or lack of energy is a hindrance. If I want to stay in my pyjamas all day, that’s fine. I can’t help clear the table, that’s fine. I can’t manage the stairs so his brother and his fiancée gave us their room. I skulk off to the bedroom for a cry, that’s okay too. I shuffle through to the kitchen smelly, scruffy and lazy while everyone else works away laying a patio. What does his mum do? Give me a hug and ask if there is anything at all that’d make me feel better. What does his sister do later on in the day? Suggest I can have a lie down or a bath and goes on to make me a coffee. Not one single time has anyone in that family suggested to me that my suffering would be reduced if I made an effort to stay more positive. If I feel miserable and am at the end of my tether, they just want to look after me.
Chronic illness comes with depression, that’s true. It’s important to address this if it becomes an issue. I addressed this by seeing my GP and asking about CBT. I saw a pain psychologist who concluded that I am dealing remarkably well with my illness. When someone is in so much pain that suicide feels reasonable, telling them to stay positive may just tip them over the edge. When you utter those words, it can only really be translated as to you not thinking our very real physical pain leaves us with a very real mental health problem where staying positive really isn’t a fucking option – OR – You think that our pain isn’t real and that by thinking about rainbows and bunnies, we will all of a sudden not be in crippling pain, unable to sleep, unable to wash ourselves, feed ourselves, socialise or work. If it was as simple as staying positive, we’d all be bloody ecstatic.
And yes, I agree that trying to have a positive outlook helps with most of life’s stressors for most people. But telling me to be grateful that I have a roof over my head does not help me in my hour of need. For starters, the roof over my head is entirely reliant upon J’s job which is hideously unsecure given the current price of oil – but thanks for reminding me about that little nugget of worry. I love our flat. I am so grateful for it BUT THAT DOESN’T CANCEL OUT MY CONNECTIVE TISSUE DISORDER. Seriously, if you wouldn’t tell someone sitting in A&E with a dislocated shoulder to be thankful for the roof over their head, don’t even think about saying it to me.
Since I got sick, my appreciation of the world has multiplied tenfold. I so look forward to activities that I took for granted before. My idea of heaven is an Indian take away and a movie with my man. I appreciate a warm house and cosy slippers. I LOVE when J fills my hot water bottle and puts it in bed for me. I am thankful for the NHS and free prescriptions. I am thankful for the friends who take the time to visit me in my home. To imply that I should be more thankful is just ridiculous. Remembering all the nice things I have, unfortunately, won’t: give me back three nights of sleep, stop my diarrhoea, cure my abdominal pain, un-trap the nerves in my shoulders, stabilise my ankles or hips or deflate the swelling in my hands.
Anyway, why would me being positive or negative matter to a friend? A friend cares whether I’m coping or not coping. A friend wants to share in the happy times and look after me in the bad times. When concern comes from a truly kind place, it never makes you feel as if you’re doing it wrong when it comes to chronic illness. Putting pressure on someone to be outwardly positive is sneakily shaming them for the inevitable dark feelings that come along with life-long pain and disability. A true friend supports you no matter what. A true friend makes you feel positive because they show you kindness, they never have to tell you how to cope, they just make you smile.
Having these brilliant friends who make you smile sadly doesn’t make the idiots disappear. Groan.