So you are really looking forward to a dinner out with friends, you have rested several days beforehand to make sure you can do this. And you have a great time most of the night, but there are these little things that start to annoy you and it eventually hits you the next day:
I’m talking about the moments where you notice that some friends in the group don’t really understand you on a basic level, or maybe have never even paid attention to things you have said in the past.
It started with this one friend who I have known for several years and I have told her I have Ehler-Danlos Syndrome and also told her on many occasions that I had to cancel because I’m ill. She also know I don’t work because I’m disabled.
We had been talking about something else, an event my partner and I do every year in the family and which I have not been able to attend to for the last couple of years due to illness. She asked why that was and what sort of illness I had!
Then she invited herself to this event without even asking us if that was ok and then when we said goodbye she said to me ‘I will see you then’. And I needed to explain again (!!!) that I am not going because I am not able to. Now seriously, how many times do you have to tell someone?
At the end of the night when I said goodbye I had to do that quickly because I was horribly unwell and had to get home as quickly as possible. Several of my friends were surprised I had come by car, even though I live at ‘walking distance’ (walking distance for a normal person). Have they completely forgotten? I had to explain it all over again!
Not all of them asked, some know and are very kind and understanding and I really appreciate that. I even have a friend who goes out of her way to rent a wheelchair for me! Those are the truely amazing people to have around.
But the whole thing depressed me a little bit, and it happens all the time. I rarely go out with people anymore because I am not able anymore, but I start to feel that this sort of stuff is just too much to handle on top of everything else.
It is maybe partly my own fault, I make sure I don’t look ill (paint away the ill look on my face and take care in how I dress) and I don’t talk about it if I can avoid it. When I am out I want to feel ‘normal’ for that short time I am out. I want to have a break from illness, from being stuck at home and resting.
I am not sure what the best approach is, maybe I should talk about it, maybe I should look ill. But I really don’t want to!
“My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?”
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Read more: Spoon theory
I was ‘bingoed’ two weeks ago! (the full chronic illness bingo is here).
I went to an event in a wheelchair and bumped into an aquaintance who hadn’t seen me for a long time and he was pretty shocked to see me in a wheelchair* and he started saying ‘have you been to a naturopath?’ Sadly yes I have done that in the last, out of sheer desperation. So I told him it hadn’t worked and that I have a genenetic illness and my partner explained genes can’t be ‘healed’ by naturopaths haha. It was tricky that the naturopath he was thinking of was standing nearby! Luckily he didn’t push it any further after my partner mentioned the gene thing. In my head I was kind like the above picture haha!
I know people mean well, but seriously to say that to someone in a wheelchair? You’d think they wouldn’t dare to.
*Luckily it’s only for when I need to walk long distances, the wheelchair helps so that I still can go out. I can walk short distances, but long distances are really bad for my POTS