I think that all of us Spoonies have been there: carrying guilt because of our conditions. I get it A LOT, especially lately. I feel guilty for complaining about my pain when I know that I have friends who have it so much worse than me. How can I complain when I’m still able enough to go to work 5 full days a week? What right do I have to bitch about my issues when there are people out there suffering with much worse that my conditions.
It’s a tough one, isn’t it? Each person is different with different tolerance levels to pain and fatigue and everyone’s conditions are unique. Yes, I can get up and go to work 5 days a week, but it doesn’t mean that I’m not in pain or suffering. I have Fibromyalgia and COPD (as well as other things) and I don’t know how I’m going to feel on any given day. Sometimes I have to knock back a handful of painkillers and do the best I can. Other days I don’t need many meds at all. It all depends on what I’ve eaten, the weather, my stress levels, anything. No one day is the same and there in lies my problem. I consider myself to be disabled, but to most people, i’m not disabled enough to call myself a Spoonie. Too disabled to be ‘normal’ but not disabled enough to need a permanent walking aid. The days that I feel OK are the days when my guilt is at its strongest. When I don’t need my usual cocktail of painkillers or my walking stick. When I don’t feel overly breathless and or need to take a break when i’m walking up the stairs at work. When i CAN walk up the stairs at work. That’s when the guilt comes out to play and I feel terrible about complaining. There are people in my life who are house bound, wheelchair bound and who can’t even get out of bed without help some days so who the hell am I to complain that my feet hurt a bit more than usual today?
It’s so difficult to let go of the guilt whilst I’m still as able-bodied as I am, but i’m starting to get there. I’ve started to say that i’m partially disabled as to me, that sounds much more accurate for my current conditions, as well as bring true. I don’t need my walking aid all the time. I don’t need my prescribed opiates all the time. I can walk up stairs and I can go to work full-time, but I have days when I really struggle to do all those things.
Every Spoonie is different and I shouldn’t feel guilty for being more able than others. I have faced scepticism and been accused of faking it and I understand that. I can see why ‘normal’ people can look at me and wonder if I’m lying because if it’s a day when i don’t need my stick, i ‘don’t look ill’. But do you know what? I’m done with worrying about what able-bodied people think about my conditions. I don’t know how long I have left being as able bodied as I am and I absolutely refuse to waste any of that time being concerned about whether or not people wonder if i’m ‘disabled enough.’