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!


About livingwellwithchronicillness

I'm just a random person with a few chronic illnesses who likes to blog. I have Ehler-Danlos Syndrome, POTS and a few other things. At the moment I am quite housebound so I decided to create this blog. Will update my profile when I'm a bit more inspired :)

2 responses »

  1. I have found that people, even your own relatives, simply do not listen to you, and so do not comprehend your illness, no matter how many times you tell them. Be thankful for the few true friends – the one who gets a wheelchair etc. And of course you want to go out and not think about your illness for a short time.

  2. Yes true, especially family! I could write a whole article on that. This incident above happened a while ago and these people have adjusted a bit, one of them (the one who tried to invite themselves) even offered to come and bring me food when my partner was on holiday for a week. I was so surprised, in a good way 🙂

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