I’m really annoyed and upset. Like, seriously. I’ve had a long day today, I worked 9-3 then nipped home for half an hour and came back out to see some friends. I’m exhausted. Really unbelievably exhausted. To the point where I can barely hold myself up. I left early and went to the bus stop to wait for my bus. I had a twenty minute wait. Now, standing for this long is usually easy for a regular person. When you’re battling ME…not so much. I found a small ledge by the bus stop and plonked myself down, it was either that or I was going to fall down. As I did so, a middle aged woman gave me a look of disgust and shook her head. It took every fragile bone in my body not to confront her. She walked past and to be honest, I got quite upset. So there I was, teary, exhausted and sat on a ledge in the middle of Leeds. It was at this point I started realising how much of a mess the world is in.
I have an invisible illness and as the name suggests, it’s invisible. You can’t see it. You don’t know its there. I mean, most people don’t even know it exists. This really gets to me. I’ve been on buses where I’ve had to stand for half an hour because all the seats are gone. I’ve seen people give up their seats to able and active senior citizens. What about me? I was clearly in pain. What? Because I’m young I’m fine? No. Nobody seems to understand what I go through on a day to day basis. Nobody cares. If somebody has a visible illness, it’s real to people. They can see it, it’s there. I can guarantee that I struggle just as much as they do, I’m in pain 24/7. Yet because I can’t prove it or show anyone, I’m lying.
The new manager at work told my colleague that I was flaky. Thankfully my colleague is a good friend and understands what I deal with. She shot her straight down.
“Actually, hang on a minute, this girl is 21 years old and has ME. She has worked 10am-6pm for over a month for us and it’s almost killed her. Yet, here she is, still working for you and coming in on what she thought was her week off.”
That made me livid. How dare she say I’m flaky. I shouldn’t have even been working full time. I went from 8 months off because of illness to full time almost instantly and was always on time and always working to my best standard. That’s incredible.
I don’t really know where I’m going with this post as I’m angry, upset and on a bus. I’m in pain. Everything hurts and I can barely move.
I’ll make a better post soon. Just needed to vent.
Love you all x
midnightwriter2.wordpress.com 
As soon as I saw ‘invisible illness’, I was drawn to read this. While I can not possibly know how you feel, I do know how it feels to be in pain and totally burnt out (that’s just from ‘normal’ life, never mind having an illness).
I think you are amazing to be able to work at all. My partner has ME (as well as DID, Autism, and a hole in his brain. I also have a son with Autism and hypermobility, and my Dad has bipolar so I know a bit about invisible illness!) Anyway, it’s exhausting being the partner of someone with ME and, as much as I try to understand, I admit that I get frustrated with his illness. He is unable to work simply because he doesn’t know if he’ll wake up from one day to the next, or if he’ll be well enough to even get out of bed. So you are, as I said, doing well to manage to keep a job and travel on public transport. My partner walks with a stick so that makes his illness visible. I’m not sure that other people would be as supportive and understanding if he didn’t have that.
I’m not really sure what my point is here but just to say that I understand why you’d be angry and I am angry for you.
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