I’ve been feeling pretty crappy lately. It’s winter and the short days of cold, windy rain are taking their toll on my body. I hurt. I’m sad. I’m ready for a break from the relentless pain and monotony of feeling terrible. Of course I don’t dare say that out loud. I don’t show that part of my life to many people. It’s private. It’s my struggle. It’s a battle that I let few help me with.
There are a number of reason for this.
Firstly I am not great company when I’m struggling to deal with the higher levels of pain. I’m quiet, introverted and can barely smile or speak. For someone known for their loud, positive, chatty, bossy nature this part of me can be quite shocking and it can make people worry. I haven’t got the energy reserves on those days to explain and to reassure others, So I batten down the hatches and cut myself off for a while. I survive. I do what needs to be done for my children to remain safe and well, but that’s it.
Secondly, I can not stand the idea of people pitying me, of course it’s tougher than most people will ever know to fight as hard as we do, but do most of us want the sad head tilt and sympathetic nod? Not really, We just want to be treated normally. By all means ask me how I am doing and if there’s anything I need help with, but talk to me about the things you’ve done or read, ask me about all the millions of other things that make me who I am. I still have thoughts, ideas, opinions and a life outside of my diagnosis.
Thirdly, when you live every day locked in battle with your body, sometimes it’s nice just to forget and to play make believe, to be just those parts of you that you can accept in that moment. For me this would include showing pictures of my kids and I in the countryside or smiling after a swim or paddle board. Maybe it’s me rambling on social media about the state of the world in various groups or debating brexit, housing, trump, war or any number of things that in that moment have zero to do with my health. I could be talking online about when I used to dance and sing, or play football. I could upload pictures that make me look healthy, happy, positive and strong.
I choose to be that person. To fight, to reflect and grow, to try my absolute damndest to stay positive as far as the world can see. Then I read the most horrifying of articles. A woman is currently being taken to court for fraud, apparently she doesn’t look sick enough. She looks too happy on social media to be disabled. She shows too much positivity in the way she presents herself online. She isn’t defined by her illlness, pain and abilities because she publically smiles and fights, so she should be punished.
I don’t think I have ever read an article that made me feel so personally vulnerable and anxious. I immediately went through my own social media, damn it I look happy! I’m outside and smiling. It appears that I’m living the full life of an ordinary woman.
I’m in deep trouble.
Should I post pictures of my boyfriend or kids putting my shoes on and off? Should I document the days of rest I have to have, to be able to smile and get outside at the weekend? From now on each time I use a mobility aid should I photograph it and publically share it? Do you want to see me each day crying or with pain etched on my face, simply to reassure you that I am indeed sick? Is this what I should do?
Or do I quit?
Do I leave the lifeline of social media instead? A place where I can be the me that is everything, the place where I can get out even when I am trapped inside. The place where I reassure my family and friends that I am ok, the children are ok and that we live a wonderful happy life despite everything that’s thrown at us.
Social media is so many things to so many people; for me it connects me to the outside world, it makes me feel like I exist when I feel myself fading away in a blur of pain and distress. By liking people’s pictures, commenting and sharing things that interest me or I love, it reminds me who I am and what my place is in the world despite the fact I may have been stuck inside for days on end.
It helps me live.
I know many people would probably say just don’t share, don’t comment, dont interact…. become one of those Facebook ghosts that sees everything but is never evidenced to have been there. What those people don’t understand is that they get to socially interact everyday with people at work, in the shops or at the various clubs and activities they do. I don’t always have that luxury and if I choose to become an internet ghost, I feel like I’ll be slipping back into nothingness and isolation when I’m in a bad spell. No social contact. Isolation. Loneliness. Zero occupation.
One of the biggest things that changed how I felt about my health was the internet.
I’m old enough to have only known the internet as an adult, from my mid twenties onwards: I had a decade of being sick with no external support, and it was so very, very lonely. I read and I watched, but I had no one to share my discovies with or discuss my opinions. Im lucky and have an amazing family and friends but they have their own lives, jobs, kids, they cant always be there. The reality is that when you are ill, stuck inside and can’t cope with physical company, being able to connect with another human being is priceless.
The internet becomes a lifeline.
It grounds us, it connects us and it helps us define ourselves as more than just existing.
It helps us to live. It helps us see past our prognosis. It helps us be every other tiny thing that we are other than sick.
Should we be punished for that?