Hands up all those who have Spoonie guilt.
Yup. Me too.
And you’re not alone. Thousands of us who have a chronic illness often feel guilty about it. And by guilt I mean that we feel guilty for complaining or mentioning that we have a condition, but are still able to function on a relatively ‘normal’ level. For example: i have a 9-5 job that I do 5 days a week. It’s not easy, but I can still manage to do it. Some days are harder than others, but right now? Yeah, I can manage. I also go to the gym 3-4 times a week (GP referred) and again, it’s tough to find the motivation to get it done after a full day of work, but at the moment I can do it.
But I often feel guilty about being able to be…..more abled. I have friends who can’t work a 9-5 week, and some who are unable to work at all, so I immediately feel bad for complaining if i’m having a bad pain day when I know others who literally can’t get out of bed. How can I possibly think it’s OK to complain when i’m able to leave the house. And the truth is, I don’t complain all that often. I may mention it in passing if someone asks me if i’m OK: “Yeah, just a bad pain day is all,” but I won’t elaborate because I have pain constantly and ableds just don’t understand that someone can have constant pain and not get better.
And the problem lies with the good ol’ invisible illness issue. If ableds can’t see that something is wrong, or a reason for the pain, they just can’t comprehend what it’s like to have an invisible illness. If my arms were in plaster casts, it would be blatantly obvious what was wrong, but my arthritis is invisible. And no-one but me knows what it’s like to wake up and my hands be frozen in agonising spasm until i can get my first lot of medication down my throat. No-one can see the constant burning and throbbing pain of my hips, pelvis, lower spine, shoulders, elbows wrists and fingers. No-one can see the bone deep fatigue that comes with Fibromyalgia. No-one can see my conditions, and because no-one can see them, I feel guilty about complaining. With all my conditions, I could be classified as disabled. Unfortunately, the guilt I carry makes me feel as though I’m not disabled enough to ask for any extra help or consideration to carry out ‘simple’, everyday tasks. Sometimes I need my walking stick to get around, most of the time I don’t. Sometimes I need help to get my balance, most of the time I don’t. And because it’s not most of the time, a huge majority of people would consider me to be not disabled enough to warrant labelling myself as disabled. Now I just the term less-abled as it’s less likely to draw judgement from those who question my conditions purely based on the fact that they can’t see my carious illnesses. Less-abled is less likely to offend the ableds.
I often get angry that the vast majority of the population need to have some sort of visual ailment to consider someone to be less abled than others. It takes a plaster cast or a bandage to be taken seriously. For example, at work i’m currently trying to get a new office chair as my currently one is nowhere near suited to my conditions. But, in most companies, i’m having to fight all the way and prove that I can justify the x-amount of money the company will have to shell out for a brand new chair. And they even had the bloody cheek to say “now everyone will want a new chair.” Full offence, but I don’t give a flying fuck what other people say, I just want a fucking chair I can sit in for 7 hours a day 5 days a week that supports my spine and helps take the pressure off my pelvis. I also know that if/when said new chair does arrive, i’ll have to put up with all sorts of shitty comments from the usual office wankers about how “but you don’t look ill.”
And that’s exactly the issue here, isn’t it? You don’t look ill. No, I don’t. But just because you can’t see it, doesn’t mean it’s not there. And from now on, I refuse to be made to feel guilty for speaking up if i’m having a bad pain day, or if my fibro fog is fucking with me.
I wish that Spoonie guilt wasn’t a thing, but it is, and i’m adding my voice to all those who live with it too.