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I’ve had some health conditions which I’ve worked hard to hide. Endometriosis that left me doubled over in pain and too embarrassed to explain to other people why I was in agony. Persistent fatigue from ME that was impossible to describe to people who didn’t want to understand or who were quick to dismiss it because “we all get tired.” Hiding those conditions became second nature to avoid embarrassment, shame or the frustration of being misunderstood. Keeping quiet was my way of limiting additional pain and distress.
More recently, I’ve had two conditions that I have been determined not to hide but the reactions to them have been surprising and shocking.
Firstly, I caught Covid at the beginning of the pandemic and was left with Long Covid, mainly presenting as difficulty with breathing. The level of interest, sympathy and kindness really surprised me. It far exceeded anything I had ever experienced in my years of having ME. It still took a long while to get help for the condition but in the meantime, it was easy to explain and I felt cared for and nurtured by almost everyone. And when the medical help did arrive, what was offered to me was much more comprehensive than anything I had previously been offered for ME.
Secondly, I damaged an ear which resulted in hearing loss in that ear. It was a relief to think I wouldn’t have to explain to other people what hearing loss is and that it can be resolved by simply putting something in my ear. I assumed it would be easy to talk about. Sadly, I have been shocked to discover just how many people expect me to be embarrassed about my hearing loss and my need to wear a hearing aid. I endure the usual jokes about my age (ironic as my hearing loss is not age related!), many couples seem to moan to each other that one of them doesn’t hear the other one properly, and people seem to feel awkward that I’ve been so up front about it. It has also been shocking to discover how focussed people are on whether a hearing aid is visible or not. They assume I want to hide it and look rather startled when I proudly show it off.
Reflecting on all this, I am sad to think that other people’s reactions have influenced how I see myself and what I am willing to talk about. I also question whether my own reactions affect how other people deal with their disabilities and health conditions. What impact am I having on how others view themselves?
In the bigger picture, how do we educate and inform people to avoid unhelpful reactions? Why is it acceptable for some conditions to attract more medical attention while others languish in the background waiting for a breakthrough?
Finally, if we talk about levelling up society, how do we level up so that nobody feels the need to hide, be embarrassed or ashamed about their condition? And how do we level up the resources so that certain conditions don’t get preferential treatment above others?