I’ve spoken so many times about the ways in which society views and treats me because of my physical disability. I’ve talked about it in the context of friendships, romantic relationships, the workplace, and when I’m just walking down the street. But in all this exploration of how my disability can impact different social situations, I haven’t yet mentioned the context where I experience the most infuriating type of judgment; the place where no matter how I approach the situation, it can honestly feel like I’m talking to a brick wall because nobody is taking any notice of the words I just said. Any guesses?

It’s the hospital. Yes! That place where my condition and the symptoms of it are only supposed to be helped!

But before we delve into why I find interactions with medical professionals frustrating more often than I’d like to, first I should mention that the way my disability affects me doesn’t really fall in line with the socially accepted notion that a physical disability = medication and constant hospital appointments. I don’t need to take any medication unless, of course, I have an infection but everybody would need to get on the antibiotics in that case, so no special treatment there. My Spina Bifida is more about careful management of several factors which, if taken care of effectively, help me to avoid getting blisters and subsequent infections.

For instance, I need to have a regular supply of specialised footwear with padding to protect me from standing on anything sharp – that part is just the definition of a working shoe lol, but I need a little extra padding because if I stood on something, I wouldn’t be able to feel it and step off of it when it caused me harm – and then there needs to be enough structure in the shoe to keep my foot in the right position as I walk. This is because my Spina Bifida means that my feet curve outwards, so I need the shoes and callipers to make sure that I can walk straight. These shoes are made out of leather so once the leather softens, they don’t support my foot properly, so we need new ones. It’s a delicate situation, but it’s not complicated.

Aside from footwear, I need regular chiropody to ensure that the SUPER fragile scar tissue on my left foot has enough hard skin over it to protect it, but not too much that it causes me blisters. Again, it’s delicate, but it’s not complicated. Undoubtedly there are other aspects of living that impact the condition of the skin on my feet like the weather, my stress levels, etc, etc, but as far as what medical treatment I need, those two are the main ones. If they’re taken care of in enough time, and with enough careful attention, then it’s pretty easy for me to avoid complications.

IF.

At the start of the year, I had to have an operation on my foot to remove an infection, and since then I’ve been on my best behaviour to ensure that the skin heals. I stayed off of my foot for the best part of a month even though doctors told me that there was no reason why I couldn’t weight bear, and I’ve taken every precaution possible to minimise my walking since I moved back to London. It took until the start of March, but we got there. Then I went to a chiropodist.

Where, I very politely, though clearly, asked the lady to please be extra careful around the area and to just even the parts of my foot where old skin had fallen away unevenly. However, as has been the case at various points in my life when I’ve sat in a doctor’s office, she ignored what I’d said – assuming that she knew better, even though she hadn’t even heard of my disability when I’d mentioned it – and she cut me. I bled, boom, what had been healed when I walked in there, was no longer healed.

And you know what? I wouldn’t even be mad in these situations if the doctor apologised, because people make mistakes and my skin is incredibly delicate. I would’ve still felt the pit of disappointment in my stomach when I saw the blood and knew that that’d sent me back to square one again, but I wouldn’t be angry. What makes me angry in these situations is that somehow I get blamed for it! I’ve had multiple doctors turn around and get all defensive in saying that whenever I see a new doctor I need to be really clear that my skin is delicate, or I need to be really clear about where the padding should be on my shoes or insoles, or that I need to explain what Spina Bifida is and how it affects me, because otherwise the doctor isn’t going to know and they could hurt me.

Only, I just did that. And my words should’ve only been corroborated by everything it says in my notes on your screen. You just didn’t listen to me, (or read them), and now I’m the one who has to go home and do my best to avoid developing an infection so I don’t have to come back. Because trust me, I don’t want to spend any more time in these blue and white walls than I need to.

This is the point in the blog when my conscience tells me to note that this isn’t the experience that I’ve had with all medical professionals; my life has been totally transformed by the amazing treatment I received from some doctors and nurses. I’d also be the first to shout about how the NHS needs to be treated with more respect and given the funding it deserves so that the people working within it have the resources to provide the best care. However, coming across a doctor who fully listens to me and helps me to take care of my disability can honestly feel like finding a needle in a haystack sometimes, and that’s simply not how it should be. I shouldn’t be so used to being ignored and patronised when I walk into a doctor’s office that it comes as a pleasant surprise when I’m actually seen.

I shouldn’t go to such efforts to take care of my disability for three months, go to see a doctor for twenty minutes, and leave with an injury. Or at the very least, without a sorry.