Nobody wants to look unwell, in fact many of us that are chronically ill do our level best to hide that we are ill from the outside world. However, it always results in those lovely conversations of 'are you sure? You don't look ill.’ How do you politely tell someone that you think your team of highly trained medical professionals may actually know more than someone you have just met who has looked at you. Looking ill is such an interesting concept, what do we as a society expect people to look like? Are ill people supposed to stay in their houses? Or maybe ill people aren’t allowed to smile or laugh. The whole concept is ridiculous when you really think about it and let’s face it, the majority of illnesses are invisible. Someone with the flu could conceivably ‘look’ more unwell than someone with cancer.
I get the 'but you look so well' when I am using my wheelchair. I always feel like asking what people expect me to look like. Are they shocked that I brush my hair or put a little make up on, I don't know maybe dishevelled is what they expect. I do those things because like everyone else I want to look nice or feel pretty. I also do it to help maintain my mental health on the days when I can. I think it is important to try and maintain these things as it makes me feel better. Who doesn't like their husband / wife / partner saying they look gorgeous. Why should that be any different just because I am chronically ill.
It doesn’t help that we are also conditioned to not talk about illness. You think about every time you have seen a doctor - the very first question that they ask you is: how are you? I bet you that your response is, I am fine thanks doc, how are you? Fine - really? Then why are you at the doctors, of course you’re not fine. We become experts at hiding our conditions. When we are at our worst then just getting out of bed is difficult. So it's only really the people who are really close to you that see how bad you really are. I think only my husband and best friend truly know how bad things are. To some extent my step children as well, there is only so much you can hide when you all live under the same roof. Even my parents and sister don't see the worst of it.
I think this is almost part of the Facebook social media culture that we live in. We always want to portray to the outside world that everything in our lives is amazing, from the food we eat to the holidays we go on. Very rarely in Facebook land do you get an honest status because let's face it most of the time lives can be a little boring, or difficult, or uneventful (oh how I long for uneventful). But the boring stuff doesn’t make it to Facebook - I went out did the grocery shopping and fed the kids isn't a status you read often, it's not exciting enough. So we now all live in almost a false bubble that everything in life has to be exciting because we see everybody else's life as being that. It is interesting though on the rare occasions where you get an honest post, for example someone saying genuinely that they are struggling, the overwhelming support that you see on those statuses. It is amazing. So maybe we should all be a bit more honest on Facebook. Maybe your dinner wasn't really the most amazing thing you have ever tasted, or maybe you are struggling with life's stresses or maybe you’re not feeling well. Perhaps we should all stop hiding behind this social media mask of everything is fantastic.
So as you will all be aware I had my elbow surgery this week (this was my 18th operation) and in a concerted effort to be brave and to try and embrace the not so glamorous side of illness (I’m still yet to find the glamorous side!) I asked my husband to take pictures of me throughout the day. If you follow my page on facebook page you will have already seen some of these. The surgery went well, though they had to revert from key hole to open to sort the nerve out, time will tell if it has been successful. My arm is all bandaged up and in a sling so I haven’t seen the wound and can’t take the sling off for 2 weeks. I believe the incision is about 10cm plus the smaller ones for the laparoscope ports. From my point of view the trickiest part was getting the cannula in, the anaesthetist was a lovely lady, who has seen me before and is familiar with my condition. Unfortunately, the vascular problems seem to be getting worse and it is becoming increasingly difficult to get blood or cannulate. Anyway, the ward doctor started with my wrist to get blood and then my veins went into hiding, the lovely anaesthetist ended up having to use an ultra sound to try and find a deeper vein. Eventually she found one on the inside of my bicep, but once the cannula was in the vein blew, we tried again in the same area but nothing, it was quite painful there as well. By this time the theatre staff were starting to get twitchy so she went for a really small needle on the inside of my wrist again, just big enough to knock me out. Whilst I was under she popped a decent size cannula in the top of my foot. It’s getting that bad that I guess I should be grateful that they didn’t have to drill into my shine bone to get an intraosseous cannula in. After the operation we were talking the very nice lady who was my nurse for the day, she had never met anyone with EDS and she gave me the most amazing compliment. She actually called me her hero for the way that I deal with all of the health problems. I don’t think I have ever been anyone’s hero before, I was really quite humbled.