Yes, that’s poor grammar. But I bet it got your attention! Over the last 18 months or so I’ve paid more attention to disability issues. And I’ve noticed that there’s a lot more disablism out there than I expected.
I’m not just talking about a general ignorance among the general population about the issues that people with disabilities face. There’s also a kind of hierarchy of disabilities that are deemed more or less acceptable. I’ve also seen a lot of “my condition is bigger/badder/more life affecting than yours” posts as well as comparing symptoms to decide (subconsciously) who suffers most.
As I touched on in my last post, I have a feeling that this is due to the attitude we as a country have towards disability and benefits. The media and government have moulded our thoughts by publishing story after story about people claiming disability benefits while working, playing sports or other physically demanding activities. We’re led to believe that those people are “playing the system”, that they don’t deserve the support. How many times have you seen someone with a blue parking badge and thought “but it doesn’t look like there’s anything wrong with her!?”
I’m guilty of this myself. I had a flare a couple of months ago. I was off work for 3 weeks. I know that the best thing to do is to get up and move, go into town and have a wander (plenty of places to rest). But I didn’t. What if someone saw me? Then there’d be the questions “If you’re fit enough to walk around town, surely you’re fit enough to work?”
So I pottered around the house, hiding away until I reached cabin fever stage and went back to work. I wasn’t 100%, I was probably about 50% – but I knew that resting at home wasn’t going to work. I had my return to work meeting and just said that I was fit enough. It was easier than explaining the whole truth. The best thing about an “invisible illness” is that it’s easier to play down.
I’ve spoken about spoon theory before. It’s a great shorthand for fatigue. When I returned to work I was saving all of my spoons for work meaning that I had nothing left when I got home. I was literally waking in the morning, going to work, getting home and falling asleep on the sofa within 15-20 minutes. I’d then wake up 4-5 hours later, grab some toast if I had the energy and then go to bed ready to do the same again. (I’ve been thinking of adding forks to the spoon theory to help describe the physical symptoms – but that’s probably going to be a post in the future.)
But, and this is the key thing, people at work shouldn’t have to know about that. They’re all dealing with their own crap and I know how to manage mine. So when people see me out and about walking funny, constantly with my phone in my hand (my disguise) I’d rather that they thought I was just ignorant.
But there’s also the comparisons within each subgroup. Almost a one-upmanship of people who feel that they need to validate their experience. Let me make one thing absolutely clear – your experience is exactly that – yours. No one can tell you how much or how little you should be affected by your condition.
Let’s take AS as our example. I have quite extensive fusion (I have a neck rotation of 45°, it should be 60-80°) and I think that already discussed my tragus to wall measurement (25cm instead of 0cm). But I can manage that. There are others out there however who wouldn’t be able to. That doesn’t mean I’m tougher or they’re “playing on it”, it just means that different people can manage different things. There are plenty of people out there with symptoms that I would never be able to cope with and I would be constantly in tears if it was me.
The only comparison you need to be concerned about is with yourself. Are your symptoms better or worse than yesterday, last week, last month, before you started that new treatment? Because it’s this comparison that will allow you to work with your healthcare team to find the best mix of treatments for you.
So here’s my advice (for what it’s worth). Try not to think that you’re any better or worse off than anyone else – just ask yourself “am I better or worse than I was before, and what does it mean for my health?”