Oh, the irony!! For over 20 years I have battled the invisible nature of CFS and wished that there was some visible sign of how sick I really was at times. But now, after shaving my head for the Leukaemia Foundation’s World’s Greatest Shave three weeks ago, suddenly people ARE looking at me as if I’m sick – and it’s not very nice at all!!
Like many others with CFS I’ve often lamented the fact that it is an invisible illness, and have far too often heard that most-hated phrase “Oh, but you don’t LOOK sick!!”. The amount of times I’ve wanted to scream when I’ve heard those words! To be so incredibly exhausted and in extreme pain, but to appear perfectly healthy is hugely frustrating to say the least.
I have always thought it would be a lot easier having an illness where there was some physical sign that I was ill. But lately I’ve had reason to reconsider my position on this. With my new very short hair cut I am being mistaken for someone who is undergoing chemotherapy. It’s not just my imagination either because other people around me have noticed it too.
On a recent ferry trip while holidaying in Perth I was resting my head after a long day bike riding and swimming at Rottnest Island. My hat had fallen off my head, but as I was in the shade I didn’t replace it. Twice I was asked if I’d like a seat, once by a very concerned lady who was holding out a sick bag for me. I thought it was a particularly worried look for someone with suspected sea-sickness, but it didn’t dawn on me until we got off the boat that the lady didn’t think I was just seasick!!
The irony of that ferry episode was that I was actually celebrating having coped with a very physical day better than I had for years. I am actually the healthiest I’ve been for a long, long time! Yet another irony in this story :-).
I am surprised to find how much I really don’t like people feeling sorry for me. Well, maybe I’m not surprised because I’ve never liked people feeling sorry for me, but I’ve never had to deal with the “oh, look at that poor girl. She must be so sick” look. Mostly it’s been dealing with the “oh, is that the girl who has that chronic fatigue thing. Whadda ya reckon? Do you think she’s really sick?” look over the years, so you’d think the new sympathy would be welcomed, but it turns out it’s not.
I have never really sought sympathy in my rocky journey with CFS and electrosensitivity, but a bit of empathy is always appreciated. And now I’m getting sympathetic looks and extra assistance because A HAIR CUT is making people think I’m sick. I see some people are tempted to ask me if I’ve done the World’s Greatest Shave, but because my badge broke (which I was wearing everywhere) and they can’t be sure of not putting their foot in it, I find people just do a double take or look a little awkward. It’s quite an eye-opener for what people with cancer must deal with on a regular basis (which is partly the idea of the fundraiser I guess!).
Now I’ve had a chance to walk in the shoes of people who actually do LOOK sick, I realise that getting to masquerade as a healthy person through 20 years of CFS wasn’t actually as bad as I thought it was. It turns out it’s another case of be careful what you wish for!
So chin up people with CFS. You might sometimes wish you didn’t have an INVISIBLE illness, but it turns out having a VISIBLE illness comes with its drawbacks too. I think most of us would settle with having no illness at all, but this might be a moment to count our blessings – as tiny as we may sometimes see them as being!
Related Posts – ‘Allergic’ to Electricity – My Story with Electrosensitivity; Trapped In My Body; My World’s Greatest Shave – On Having No Hair!, My 5 Pain Management Strategies; Physical Image: How important is it? – World’s Greatest Shave 2013, My 5 Pain Management Strategies