May was ME awareness month. I’ve never really paid much attention to awareness months and days for anything before because I forget about them. Unless it’s all over social media because everyone is already aware of the thing and talking about it. In which case, I never really have anything to add to the conversation.
But this year I was reminded of ME awareness month at the end of April, and decided that I wanted to make an effort to post something. There were prompts being shared of things to post about each day of May, but I knew I wouldn’t manage that. But I wanted to post at least something.
I spent ages looking for things that I could post. Eventually on the 11th of May, I found stuff that I felt okay about sharing. Infographics that had been made by other people, or tweets from other people, that I shared on my instagram stories. That kind of thing.
But going through all the stuff people had posted, to find something suitable, was more emotionally difficult that I expected. It reminded me of how bad I used to be, how bad I could potentially be again, all the things I missed out on (as others talked about things they missed out on), how much I wish I could be healthy at times, how much doctors can suck, and so on and so on.
And that’s the other reason I don’t really pay attention to the awareness days and months for things personal to me. Because it is hard. Because it’s difficult to talk about at times. And I wish I didn’t have to talk about it. I wish people were as aware of ME as they are of other illnesses.
I try to do my bit. To share information about research projects so they can find participants and funding. To post here, where most of what I write is rubbish anyway and isn’t even read by many people, so I can feel like I’m doing something. To pay attention to other people sharing their stories.
But it’s hard. Sometimes I want to bury myself in my duvet and forget about it all. The awareness days and months help people learn. But I wish I could be the one learning instead of the one teaching. I wish I could be detached from it and not have to feel it all so personally.
And I wish the emotional difficulty of awareness days was talked about more so it would have been easier and quicker to put this into words myself.