Disability Chat: when you’re at your limit, and you have to keep going.
When I was younger, and only had pain in one part of my body, I couldn’t comprehend how people could deal with multiple body wide chronic illnesses. Fast forward to today, and I am one of those people.
Over the past few months I’ve realised that whilst I’ve tried so hard to not be my disabilities, I inevitably am them – particularly at this stage in my health. Just like I forget how many years I’ve been chronically ill for, I forget sometimes just how much my disability impacts my life. And that’s okay. But, let me tell you something, no matter how much humour I infuse to any interaction, it’s really hard. The world isn’t made for people with chronic illnesses, disabilities or the like. Nor does it deal well with those that are disabled or chronically ill. People are far more likely to apologise to me, than ask if they can do anything to help with accessibility. And, I know that people won’t be as awkward if I make them chuckle in a conversation, than if I actually told them how I was feeling on any given day.
That brings me to this little ramble. I need to get something off my chest – in regards to my health I reached my breaking point months ago, and I’m currently at a ‘survival’ stage. But, want to know another thing? It’s okay to be in that survival stage. I’m not saying it’s healthy, and I’m not saying you shouldn’t try everything in your toolbox to get out of the survival stage, but sometimes – if it’s needed, you just need to go into survival mode. You need to celebrate the little things. You cleaned your face today? Hell yeah, go you. That’s no small achievement. Managed to put a little something in your stomach, even if it’s just to take meds? Well done. Changed your clothes? Give yourself a pat on the back. The small tasks when in survival mode are no small feat.
Now, I want to move on to another little point – I can only speak for myself, but with all my chronic health conditions I do not want sympathy or get well soon wishes. That might sound harsh, but hear me out. I am not going to get better – or at least not any time in the near future. I’ve accepted that, got ten plus years of experience behind me, and I wear the t-shirt (not really, but I’m tempted to make one). So, this brings me to one of my bugbears – telling me ‘you’re sorry’ does nothing apart from make yourself feel better for a little bit – and that’s fine. I get it, it’s a knee jerk reaction – hell, I’ve done it multiple times. But here’s the thing – after you’ve told me you’re sorry, you’re going to go about your day and most likely forget all about little old me. And that’s life. But, I’m not going to forget, because I live it. Day in and day out pain (and a bunch of other symptoms) are my constant companions. Also, I don’t want you to feel sorry for me. I’m a badass.
So, how do you get past the knee jerk ‘I’m sorry’? For myself, people telling me ‘that sucks’ works just as well. It lets me know you’re aware that I’m in a particularly not great situation, without resorting to sympathy. For others, ask them. Some people might prefer the ‘I’m sorry’ response – everyone is different.
I try not to give the stock ‘I’m fine’ response when asked – unless it’s a really fleeting interaction, because it erases the fact that I might not be fine. Within the space of our interaction I might need to find somewhere to sit down, or ask someone to repeat things because my brain got distracted from my nerves being all over the place. If I said I’m fine it would make it harder for me later in the conversation if I needed those things, or suddenly spaced out.
I think it would be remiss of me if I talked about chronic illness, disability and the like, but didn’t portray my bad days – or in this case months. The times when I’m at my lowest, when I can’t see if there will be a bright spot soon, or when the world is just not made for me. Able bodied people, and people with other chronic health conditions need to know the true extent. Why? Because if you don’t know – if you’re uninformed, then nothing can change.