“But You Don’t Look Sick”

I’ll be honest no one has ever told me that I don’t look sick. I am normally told “you’re looking well”. I did get quite close to being told “but you don’t look sick” one day last week and it really irritated me. I wonder how someone can judge from a couple of photo’s if I look sick or not?

The problem is most people don’t know me well enough to be able to know when I am looking sick with or without makeup. They only “know” me through the internet, they only see the photographs that I am happy to post on my social media feeds. I’m hardly going to post hideous photographs of myself that will be out there for all eternity. Although to be fair over the years I have posted some shockers!  My family can spot when I am really sick a mile off and so can I but when you are naturally very pale the difference between normal and feeling terrible can be very subtle. When I am very sick the colour drains from my face or I can look quite yellowy. Unless you have seen this on a regular basis in person, it can be very difficult to spot. So it does get frustrating when people see me or photographs of me and say “you’re looking well”, when inside I feel truly dreadful.

I have decided over the last few days to start wearing makeup again in an effort to feel more human. I am fed up with the sick pasty white face staring back at me when I look in the mirror. I also posted the photo’s on my The Myasthenia Kid facebook page and my Instagram account unfortunately by doing so I have inadvertently fallen foul of those who claim you can’t look good whilst feeling like your head is going to explode.

For two days last week I had back to back migraines. Both occurred on days that I had put on makeup. Clearly my applying makeup had nothing to do with the migraines, it was just really shitty timing. By posting these photos I fell foul of the chronic illness police (CIP) as when you are sick you must never ever smile, pose for photos or look like you are enjoying yourself. It’s just not on and you're letting the side down when you do. There is a really judgemental side to some of the people within the Chronic illness community however it isn’t solely confined to this community. It seems many online groups seem to hold their members to standards higher than are humanly possible. This is the picture which exposed me to the wrath of the CIP.

Apparently you are only allowed to look like this (photographs below) when you are chronically sick

The thing is I don’t want to look like that all the time to fulfil society's expectations of long term chronic illness. Sometimes I like to remind myself of the old me. The person who wouldn’t step outside the house without makeup on. Who dressed nicely instead of wearing what is comfortable, the majority of my days are spent in lounge pants. Just occasionally I like to remind myself that I can still be the old me just a massively revised version. I won’t apologise for wanting to look nice or for getting dressed. Its up to the individual how they live their lives and present themselves to the outside world. If you want to or have to wear pj’s for the rest of your life I will defend your right to do so. However I expect you to have my back also and not judge me because you don’t think I look sick enough.

Taking a few minutes to put some makeup on lifts my mood, low moods are something I suffer with on a regular basis especially when I have been enduring periods of social isolation. Its very easy to sit in judgement of someone when you haven’t walked a mile in their shoes. For days on end the only person I see is my husband or the postman. The social isolation can really play havoc with your mental state, so anything that lifts my mood in my book is a bonus. I have spent much of the last 9 years not caring about my appearance and I know now that has spoken volumes about my low mood.

There are days when I don’t have the energy to have a shower or get dressed but on the days I can I want to feel good. I shouldn’t have to justify that to anyone, let alone others within the chronic illness community. To have someone doubt the validity of my illness due to the fact that they perceived I looked well and had makeup on was a massive slap in the face. Anyone who actually really knows me, you know in the real world would tell you how deathly pale I was looking, how much my eyelids were drooping etc. Things that you wouldn’t notice because you don’t know me.

I suppose I only have myself to blame for posting photographs online for my followers to see. I have been posting many more of them this year as I have such a distorted view of myself that I need a kind of over exposure therapy to stop me focusing on all my perceived faults. It hasn’t been vanity or fishing for people to pay me compliments. I don’t believe a word anyone says when they compliment me anyway online or in the real world. My body issues have been around for many years so a few words on a screen aren’t going to change my mind. Sometimes I do dare to think I look pretty but those thoughts are fleeting because as I scrutinise the photograph I find fault with something. The faults I find have nothing to do with looking sick enough and more to do with the ridiculously high standards I hold myself to.

It’s a double edged sword having an online presence, when I post pictures of myself or my dogs I get higher viewing figures across all the platforms I use. If I didn’t “market” my blog I wouldn’t get any followers or regular readers. I am not prepared to hide away just because one person doesn’t think I look sick enough. I won’t lie it hurt to be judged in this way, this person has made an assumption based on one photo. If they’d bothered to read my blog they may have more of an understanding of what life is like for me, well the bits I am prepared to share anyway. I never thought I would hear the words or close to them “But You Don’t Look Sick” uttered by a member of the chronic illness gang and I hope I never do again.