Before my condition worsened last July, I spent my adult life feeling pretty embarrassed about it. No one had ever heard of Joint Hypermobility Syndrome, I wasn't very good at explaining it, and I often felt like I just left people with the impression that I was weak and a little pathetic.
And I felt weak and a little pathetic. I could live a normal life, just not as well as everyone else. I had less stamina so long days and strenuous activity would tire me out, leave me feeling really ill. I couldn't carry 'heavy' things, which to me was most things, and I lived in constant, though largely low-level, pain. And without being able to explain this properly it did leave me looking weak. And a little pathetic.
When I got worse, it was harder to hide. I was visibly in pain, I struggled with a lot more things and I took a lot of painkillers which I'd previously avoided where possible. "I didn't even know you were ill!" people said, and it was true, they didn't because I didn't like talking about it.
The issue was that before, I didn't feel sick enough to justify telling people I had a chronic condition. I didn't even consider myself to HAVE a chronic condition. I felt like people would think I was being dramatic, given that I wasn't overly affected. So I got used to not talking about it. I made my own adaptions where I could and I avoided things I knew I couldn't do if possible, rather than explain why I couldn't do them. I put up with a lot of pain. I tried to keep a couple days with less activity every week to allow my body a break. I slept a lot on weekends to catch up. If I did talk about it, or have to tell someone, I would do it in a jokey way, laugh at myself. At my limitations. I refused to apply for help in exams at university, despite needing that support during my A Levels, because I didn't want to explain why I had it to my fellow students.
In a way, getting worse has been good because I've been more open. I've told more people about my condition, I've explained it better. I've started this blog. I've outright said when I can't do things because of my health or my physical limitations, or I've said if I need adjustments. And I'm proud of that, because I am not a person that likes weakness and my condition before now had always made me feel weak.
It's important to not be embarrassed about any health condition, illness or disability. They're part of who we are and have shaped our lives. If you don't want to tell people, for whatever reason, that's totally your choice, but please don't not tell people because you're embarrassed like I was. I've had a lot of support, and understanding since I started to be more open about it (though there will always be people that just don't understand) and I feel better in myself. And I've realised that my condition doesn't make me weak, it makes me strong. Strong because I muddle through despite it. Strong because I am fighting the limitations it's currently putting on my life. Strong because I survived 10 years with almost no support (though in hindsight, that was my pride talking and it was a bit of an error in judgement, all things considered).
I really relate to this. I'm not very good an communicating about my illness, so I try to hide it but then I'm embarrassed when I can't do things.
ReplyDeleteMy mum is a bit like this. She is partially sighted, so to look at her you wouldn't even know. But she is very independent and doesn't like to make a fuss. Sometimes people who don't know her very well think she's rude for not responding when they wave to her in the street or when she scowls at them (trying to make out their faces). In the supermarket she sometimes buys the wrong flavour crisps, because the packets are similar colours, but she won't ask an assistant because she feels like they'll just think she is stupid. She has a white stick and I'm always nagging her to use it more, but she thinks it makes her look vulnerable. Last year she joined a coffee morning for partially sighted and blind people, and I think talking to people in the same situation has helped. But I try to be a bit more forgiving of people, if that's the right word, because you don't always know what they're dealing with underneath. X
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