First of all can I just define what a chronic illness is as there seems to be so many people that have never experienced anything more than the flu or acute pain who think they’re experts on what it is like to live with a chronic condition. If you’re one of these healthy little experts please read on and let me enlighten you; do you know what, even if you’re not healthy but have some form of condition/are a Spoonie yourself and compare your health to others or don’t believe a chronic illness is ‘that bad’ – carry on reading.
A chronic condition is a long lasting illness ‘which causes continuous or episodic periods of incapacity.’ The keyword is incapacity – it prevents you from completing everyday tasks, it impacts your life at all times or causes flare-ups. A cold is not a chronic illness. Anyone, can be chronically ill; illness doesn’t discriminate.
There are various types of chronic illnesses, sufferers may look absolutely fine, be able to walk unaided but be in absolute agony, others may require mobility aids, some may not have mobility issues at all, but suffer with mental health, heart, lung, digestion problems. No chronic condition outranks another, everyone is different and what really annoys me is the judgement of ignorant, ill-informed, know-it-alls.
Don’t compare yourself to me, to anyone; until you have lived a day in another persons shoes, you cannot ascertain how much pain or suffering that person is going through. Pain is subjective – it’s not a competition. Why would you want to be suffering more than another person, or them suffering more than you? You can’t tell. My pain threshold is really high because I’m used to living in constant pain but I would never judge someone who hasn’t experienced the type of pain I’m used to – how can I know what someone else could handle? I can’t and neither can you.
I’m hurt, annoyed, upset, angry, tired, of the lack of empathy, the lack of understanding, the downright ignorance of certain people who are too small-minded to do a bit of research. There’s a lot of different chronic conditions, you won’t have heard of them all, I haven’t, but do you know what I am able to do? EMPATHISE.
I’m not asking you to complete hours of research, you don’t even have to know how to spell the condition, what I’m asking is: when I tell you that the pain is so bad that I’m seriously considering sawing my leg off, you believe my pain is real; you don’t compare it to the time you fell over and banged your knee; you don’t tell me how bad your friends-sisters-boyfriend is; you don’t laugh it off and tell me I’ll get better. It won’t, my life is all about pain management and planning my every move so my flares are less often, but they’ll never go away.
And do you know what can trigger a flare-up? Stress. So your unhelpful comments like, ‘I get up, live my life and have fun despite having a bad back’ are redundant – well fucking done, some of us don’t have a choice. Do you think that I don’t want to participate in society? The constant negative opinions hurt, my body hurts, my head hurts; it’s difficult enough living chronic life without your words.
Please take into consideration that I’ve tried every treatment you can suggest, so don’t bother. Don’t waste my time or yours. Don’t pity me, telling me I’m too young, as like I said – illness doesn’t discriminate. Believe me when I tell you that I need to spend some time on my own, that my head is so messed up and I could break down in tears at any given second. Don’t tell me to ‘man up’; don’t patronise me; don’t tell me to ‘look on the bright side,’ if you catch me on the wrong day I’ll either bite your head off, cut you out of my life or imagine various ways of killing you. Just please, empathise.
I’m not asking for a hug or a long, emotional conversation, your support is all I need.
Bear in mind, you won’t see me on my bad days, I can’t get out of bed, let alone leave the house. You don’t know that my boyfriend has had to put my socks on as I scream in agony and then cry as my independence floats away. Or when the demon in my head is scratching at the back of my eyes and all I can do is curl up in a ball, sobbing. Why would I let anyone see me like that? You see me when I’m wearing my mask, when I’m in less pain, when I’ve very slowly got ready so I can actually go outside.
People are battling monsters every second, you don’t need to understand, just show a bit of empathy. That’s all I ask.