This is a question I got asked recently, and it kind of made me laugh, and it kind of made me angry, and I kind of felt a bit sad.

Yes, my cane is necessary. I am weak, and I am tired, and I am very sore. These things make walking very difficult.

This reminds me of all the times I’ve been told, or had it implied, that I “don’t look sick.” “But you don’t look sick!” has been used as a protestation, as an accusation, as an assurance, and as a compliment. So it’s kind of hard to know how to take it anymore.

I’ve written about having an invisible illness before. I feel the same frustrations now as I do then, and probably even more acutely now that I’ve had such public questioning of my integrity.

Because that’s what it is. Telling me I don’t look sick – asking if my cane is an affectation – is suggesting that I’m a liar. It’s more than suggesting, actually. It’s accusing. It’s saying that I’m either making up or emphasizing my illness in order to get – what? Sympathy? A life where I don’t have to go to work? Government support I’m entitled to?

You missed the memo where I repeatedly said: I don’t want those things. 

I’d give anything to live a life where I didn’t need a cane and didn’t have to get stared at every time I leave the house, while people wonder what’s wrong with me. For the life I used to have, which involved getting up and dressing in pretty clothes I bought myself with money I earned doing the job I really enjoyed – and going off to do that job. A life where I didn’t have to constantly awkwardly explain to people that I have an illness that doesn’t really have a proper diagnosis or prognosis, but results in constant pain and exhaustion and several other really awful symptoms that I usually don’t talk about because I find it embarrassing.

My apologies. I guess this is more of an opportunity for me to complain than anything. It’s been over a year since I was hospitalised and sometimes (especially when I am offered really exciting work I can’t take) I just get really frustrated. It’s hard enough living with this illness. Having to defend myself and my integrity is sometimes just that little bit too much.