This post is Part 2 in a series based on a presentation I recently did. The rest of the posts can be found here.
Figuring out how to juggle being “healthy” and “sick” at the same time was extremely challenging, and it was made even harder by the fact that everybody else in my life was trying to work out how to do the same thing. I heard this phrase so many times in the first weeks and months after I was diagnosed.
While simply not knowing what to say is certainly understandable in a situation like mine, I had another experience which was a lot more hurtful. Long term readers of this blog possibly remember it.
This picture is the only one I have of myself from around that time. I wouldn’t let anyone take any. To somebody on the outside looking in, who has never had the experience of taking medication that changes your appearance in ways beyond your control, it might seem like I was shallow. Surely it was silly to be worried about putting on weight when I surely should have had more to think about. The truth is though, when you are as ill as I was, you don’t feel like you, your whole life is completely turned upside-down anyway, so to also be prevented from looking like yourself, to look in the mirror every morning and see a fat, horrible, unattractive stranger, took a massive toll on my mental health, especially when somebody who had until that time been a close friend, said this to me…
Hearing that from somebody I expected to be supportive is something I will never forget. I use these pictures and this quote, in every presentation I do, and each time it’s met with the same horrified reaction from the audience. This is because I think it’s a brilliant illustration of just how unaware “healthy people”, clinicians included, sometimes are. It’s impossible to grasp how isolating kidney disease, or indeed any chronic illness, can really be, particularly when you’re young and don’t know anyone else in the same situation as yourself.
Fortunately, comments that extreme were the exception rather than the rule, and I quickly learned that a serious illness such as this one is a brilliant litmus test. It shows you who your real friends are! That’s Part 3.