‘You Look Well!’
On a lovely sunny Saturday in June last year I stood outside a music venue in Poole in the middle of the afternoon and took a photo of myself wearing a jacket and my favourite sunglasses. I had unexpectedly discovered the self timer on my iPhone and was snapping away determined to get one decent shot. Which I eventually did. Out of curiosity I posted it to Facebook to see what response it would get from others and it wasn’t long before the comments came flooding in, all of which were positive and polite but I quickly realised how important it was for others to comment on my appearance. Of course none of these people really knew that I was unwell but still the comments really made me think and in those few minutes the idea of starting a website to explain what it was like to have an invisible condition began. Nobody could tell from the photo because some illnesses are not visible on the outside. Inside I was hurting yet outside I looked fine. If you can’t see an illness it doesn’t mean it’s not real or doesn’t exist and sadly this is something that every day in one way or another I feel I have to justify to people.
I recently got on a bus and sat down on a nearby priority chair and was immediately told off by an elderly gentleman who very crossly informed me that I was ‘too young to sit there’ and that there was ‘nothing wrong’ with me. I found this very upsetting but it was not the first time this had happened. I also have a memory of my mum driving us both to the supermarket in Brighton many years ago where she parked in a disabled bay and two stern looking women in the next car sat staring suspiciously at her, waiting for her to get out of the car and walk with her stick so they could decide whether she looked disabled or not.
Unfortunately some people still judge others on what they can see and this saddens me. They mean well when they tell you that you ‘look well’ but to a person with an invisible illness struggling to explain how they feel to others it can be incredibly frustrating
Invisible illness and chronic pain often go together as many chronic conditions cannot be seen. Believe it or not some people do not even know what the word ‘chronic’ means. The word chronic does not refer to how bad the condition is but how long it lasts. A chronic illness is a disorder that persists for a long period of time and affects physical, emotional, intellectual, social and vocational functioning. Chronic illnesses can often progress over time but they are not infectious. In the UK chronic conditions account for 85% of all deaths.
When I first developed ARD I was shocked and disappointed to discover that there were people who did not understand that some conditions cannot be made better. There is no big cure for ARD yet I still had people asking what the doctors were going to ‘do about it.’ They expected it to be treated by a doctor and then simply go away and some became frustrated with me as if it was up to me to make it better and suggested I wasn’t doing enough to get well. This was all new to me. I have been surrounded by and have suffered from illness all my life and even as a child, although I may not have understood all the details – if someone in my family was ill for a long period of time I understood that it was because it could not just be fixed with a trip to the doctor or hospital. If all conditions simply ‘went away’ there would be no need for specialist doctors, surgeons, physiotherapists, psychologists etc and no long NHS waiting lists!