All my life I’ve been worrying about what people will think of me, but recently this fear has been carefully honed in on one thing: how am I gonna explain ME to everyone?
You see, when you’re at home and you’re ill and you’re doing your daily routine, you don’t have to think about your illness. No one is asking you questions so you feel like yourself rather than different to anyone, and, apart from the times you have a mini panic and feel like you have to justify yourself to yourself, you don’t have to answer to anyone either.
Since I’ve been meeting new people, I’ve avoided talking about, mentioning or letting on I have ME or how bad it is. This means the group of people I know (who are all very similar, very healthy athletic types) don’t really know what life is like for me. They don’t know that I spend days in bed after meeting up with them, for example.
Steve knows, and told me he mentioned to Olli and Fred that I have to “recover” after each meal. They said they had no idea and were apparently sympathetic and eager to know more. The trouble is… I don’t know how to talk about this.
I worry what people will think about me. I don’t want to get upset in front of people, cry, appear, well, lame on multiple levels.
I remember all the past bad situations, like Francis or Drew. Drew, one of the group members who I let in about my ME, was somewhat of a disaster. He turned up at my house one night, claiming that just 2% of what he had to tell me could change my life for ever. He had a hand gesture to go with this claim that he kept making, over and over again. “It’s not your fault you don’t know any of this,” he said, “but I can teach you all these things. I can help you. Your mind can heal your body. Just 2% of what I’m telling you, if you let it, could totally turn you around. Just two per cent!” That two per cent lasted for about two hours and needless to say I felt patronized literally to tears.
It happened that when I decided to start writing back to anyone as soon as they wrote to me (emails, private messages or public posts on Facebook etc) I had to stop caring what people thought of me. I had to put aside that “this isn’t funny enough/clever enough/enough enough” mindset. I had to just say it and submit it.
I’m socially anxious – no diagnosed with anything, but I’m undeniable stressed when interacting with people. Case in point: it’s not unusual if I say hello to someone on MSN, and if they pause before they say hello back (as is fairly common) my heart beats faster and I think “Oh my word, I’ve offended them somehow at sometime really really badly, WHAT DID I DO?”
It’s crazy and I have to laugh while writing it, but it’s true.
I’ve known for years that I have to stop caring so much about what people think about me, and that stopping caring is what will really help me talk to people about ME. Practicing quickly writing back to people has made it click. Not just click but clunk loudly and noticeably into place.
I didn’t realise it was practice, but that’s exactly what it’s turned out to be.
I have so much anger and sadness and pain about having ME. No wonder: for years the medical establishment has thought that ME was a psychiatric condition, and even though in the 80s it was proven to be physical it’s taken a long, long time to trickle through. I’ve felt branded rather than diagnosed, and I never know what people will say or if they will judge me. It burns all the more because, when all is said and done, I’m ill. Really ill. And I don’t need salt rubbed into that wound over and over again. No one does, even if you do think 2% of what you have to say to me could change my life.
Difficult conversations are made more difficult because we anticipate a struggle, and if I don’t care what they think of me then it doesn’t matter what they do or say. I don’t expect prejudices to never bother me again, but I don’t have to carry them around with me either.
I’m gonna stop caring what other people think of me, and leave all that at their door.
What is ME?
http://name-us.org/ 4 years ago