You are currently browsing the tag archive for the ‘challenging stereotypes’ tag.

I read a post by my friend today where she says she wants to pretend to be normal for a few hours, and it got me thinking. She says:

“But also I’ve been feeling this week like I just want one day, or even half a day, where I just get to be normal. Or pretend to be normal.”

Hell yes! I know what you mean. In fact last Friday after three weeks of planning, worrying and not feeling well enough, pacing the whole week before, watching the day itself grind so slowly along while trying not to use up any energy and rest as much as possible; I went out!

I just wanted so much to have an evening of doing something normal, feeling normal (or at least not really ill), having some much-needed fun and by and large i did. I had the best indian meal i think i have ever had and spent time with a great friend. It goes without saying that this was a rare occasion for me (but i will say it anyway) and that i have suffered the consequences since (but it was worth it).

I got dressed up (as much as my limited wardrobe of non-pyjama items allowed). I put on makeup for the first time in ages which felt very odd and like i was pretending to be someone else by hiding my pallor and ill-worn face: yes, pretending to be a well person. I sniffed it warily (it goes off and smelly you know when you only use it once a year) and i was feeling very out of practice.

I also had a big dilemma about whether to take my walking stick…

I quite often have this dilemma about my walking stick. Without it i can pass as “normal”, as able-bodied, though that illusion can soon dissolve and i need to explain myself anyway. If i am going somewhere by taxi and it is door-to-door with no walking or needing to stand and wait outside, and if i am not going to be alone, i will sometimes leave it at home.

Quite often when i don’t take it i find myself in a situation i did not expect and wish i had it with me, though it is rarely a major issue as it is not really a whole lot of help to me if i feel really bad. It has a seat at the top and this can temporarily help me if i have to stand still. Mostly it is a useful signifier to others that there is something wrong with me. People will be more accommodating if i ask for help or make a request to be dropped right outside my house, they will help me with my bag etc. It makes life easier and gives people warning that i cannot walk as fast or as far as they would otherwise assume.

It is nice to feel that i am escaping my ill life for a couple of hours, that i do not stand out from the crowd as a young (ish) person with a walking stick. It is nice not to attract questions and have to explain what is wrong with me to all and sundry and then have to use energy to deal with their reactions and questions. But should i “pass” in this way? In a way i feel that it is only passing due to the assumptions of people i meet that i am able-bodied and healthy, so really the problem lies with them doesn’t it? But i cannot help but feel it is important to make visible that not everyone who is young (ish) and looks healthy really is. It feels like pretending and hiding to deny my disability by not having my stick, even though it is almost useless in a practical sense!

I wonder if this feeling comes partly from my experience as a lesbian – another situation where it can be easier to pass/pretend and rely on other people’s assumptions that everyone is straight. I make a point of correcting people when they assume i am straight (unless i feel threatened, and even then i feel guilty for not challenging them). I cannot divorce my personal actions and identity from their political impact, small as that may be when i am hardly a visible part of society 99.99% of the time. Am i using an unfair priviledge to be able to pass as straight, able-bodied etc?

Should i want to be “normal”? Should i have got over that by now and embraced my disabled identity? Well i would say in many ways i have, but being chronically ill 24/7 with no break is not something that can be embraced and loved at all times – so why do i feel a traitor to the cause? I actually do not even hope to be “normal” again or 100% well (i cannot dare to hope that far, and it seems such a no-no to even speak of it within the disabled community – but hey i am used to not fitting into the club) but a break from it all and to try on a different identity that is more a choice would be nice occasionally… is that wrong?

Am i the only one who even thinks about this stuff?

ME/CFS Awareness

ME/CFS Awareness


December 2020