I read an article in The mighty.com “Why I won’t apologize for having fun while chronically ill“why I won’t apologize for having fun while chronically ill”“ last week and it really struck a chord with me. It is how those who are chronically sick are judged by those who are lucky enough to have good health and lead normal lives when they post a picture of themselves on social media enjoying themselves. It was a brilliant piece and I had never seen such powerful words before describing what it’s like when you know every movement you make is being watched and judged. Granted I have been judged by those in the chronically sick world. I have had snide comments on my blog when I have posted about having a party “I wouldn’t be well enough to do that” and that kind of thing. I am going to be brutally honest and say it cuts both ways.
I will let you into a secret about what I am really thinking when I see your posts on social media. Out enjoying yourself spending time with friends and family. Living a normal life, uninterrupted by chronic illness or pain. Some days it is more than I can bear to see your happy smiling faces. Sometimes I have to just take a deep breath and switch off the computer before I go into a rant of epic proportions, using all block capital letters “you don’t realise how fucking lucky you are”. My last days, your everyday normal days, were wasted back in 2007. I wish I had known then what I know now. I want to tell you to stop moaning about your life and enjoy it.
I want to tell you about the horrific double standards there are between our worlds. You can post on social media that you are dying from a cold and sore throat. And yes I do agree they can make you feel pretty awful but I am pretty sure those things are temporary. When you post about it, I chuckle to myself, whilst my fingers itch to post something passive aggressive in response. Don’t get me wrong I do have sympathy for people, in fact since I got sick I have more sympathy. I worry more about people, people who I shouldn’t waste the energy on because clearly they no longer worry about me. If I post about being sick I can almost hear the eye rolls as I press send. The comments that you make to one another that I am attention seeking that couldn’t be any further from the truth if you tried. Sometimes I just need to vent, after 9 years of crap I think I am allowed.
Many years ago now, someone who I had believed was a friend messaged me and told me that unless I stopped moaning she would unfriend me. I made the decision for her and deleted / blocked her on reading that message. You see I am supposed to put up and shut up whilst I struggle with daily life. However you are allowed to post daily on how awful you feel when you’ve come down with a cold/ virus / temporary bout of ill-health. I don’t want you to stop posting, I just want the same courtesy extended to me. To end the double standard.
When I see you organising nights out, get togethers I do feel a stab of jealousy that you are able to do that. I also feel sad that nobody invites me anymore. I couldn’t go even if you did invite me, I am simply not well enough but the invitation would mean you hadn’t forgotten about me or written me off. I also feel angry that nobody seems to give me a second thought. It is out of sight out of mind. I have 292 friends on social media but see only one on a regular basis and I have another two friends that I see less regularly. Many of those on my friends list live in the same town but I haven’t seen them since the day I left work on the 31st May 2008. I look at you organising your nights out and think you are one accident or chronic illness away from losing all these people who you think are your friends. I then feel sorry for you because it will mean that you will experience the pain and social isolation I have. I wouldn’t want anyone else to have to go through that but they will.
This isn’t a poor me post, quite the contrary, although I do get accused of being “negative”. I know I can be a difficult bugger, be crap at keeping in contact with people. Even with good friends I am really rubbish at staying in regular contact with. It isn’t because I can’t be bothered, a lot of the time it is because I really just don’t feel I have anything to say. It’s awkward when there is nothing going on in your life other than hospital visits and ill-health. I don’t have a work life, social life etc on which I can draw upon to talk about. Once you lose those your world really shrinks and topics for conversations dry up. So I tend to feel that there is nothing I have to contribute, so I retreat within myself.
When I see your photo’s come up in my news feed quite often I feel envious. I would love to be doing the things that you do but my body won’t let me. All you worry about in those photos are if others will think you are fat or if they like your clothes / hair. You will never know what it’s like to be judged as in “how sick you really are” by someone on your friends list looking at a photo. I rarely take photos when I am sick (sicker than normal) or if I am in hospital. I am usually too sick to be able to even think about taking a photo on those occasions. I have taken photos on my last hospital visit to brighten up my blog. Thankfully on those occasions I have had my husband there to help me and he has taken them for me.
I wish when I posted a picture on social media that all I had to think about was if I looked ok. I worry when I post that I don’t look sick enough or that maybe someone will think that because I am out of the house I am faking my illness. I have had people comment on my pictures, even the ones when I look like an extra from The Walking Dead “I wish I looked that good when I am sick”. Anyone who really knows me outside the realms of social media, knows I look sick in those photos, I do not look like I did before I became ill. I am drained by the constant need for proof some people demand. The double standards are horrific and exhausting. People will tell me not to worry about what other people think but really I don’t know anyone who wouldn’t worry. Even if I was well I would be worrying about what other people think. It’s very easy to take the high moral ground and say “I don’t care what other people think, I am just going to live my life” but it is built into human nature (I am sure) that we are so preoccupied with outward appearances.
I coo over your baby photos and pictures of your pets. I love seeing the kids enjoying themselves and the animals being thoroughly spoilt. I would have to be some kind of Ebenezer Scrooge not to. I love it when you get the job, announce the baby, celebrate anniversaries and travel to far-flung places. I also feel your loss when you post about bereavement. My heart aches when I read your posts about the loss of a loved one or beloved pet. I am there with you because I live my life through you. When you have such a limited world your online friends and acquaintances become incredibly important. I am so proud of the friend who is training to become a teacher, in a complete change of career. I am so happy that one of my members of staff from when I worked is now living his dream out in San Francisco. I am over the moon that the shy quiet girl who I had an incredible bond with at work is now training to be a nurse. I am in awe of those raising a family single-handedly. There are just so many of you who do not realise lift me up on a regular basis. I may not tell you but I am amazed at your courage to grab life by the balls and live it.
Somedays I may feel sad and be jealous of the lives you have. You may drive me slightly around the bend with your whingeing. I may want to strangle you on occasion due to yet another cryptic passive aggressive post but arguments on Facebook are a hilarious spectator sport. So what I am really thinking is…………………………………… Well it changes on any given day.
P.S Happy 1st Birthday to my nephew Elijah xxxx
7 thoughts on “What I am really thinking”
I find you inspirational. (Especially posts like these). I have similar diagnoses. My world has shrunk. I do almost nothing but lie in bed in the dark sleeping, watching tv, writing, — and going out only when I really want or need to. I feel great compared to how I did when I tried to live like everyone else and so I am always happy now — but … there were a lot of social obstacles getting to this point and I have an awful lot of residual physical annoyances. If you’re not doing anything most of the time, well, it’s because it’s what you need to do to go out when you do. Thank you for being so brave about writing it out online.
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Thank you so much for reading my blog post and taking the time to leave a comment. I won’t lie I was nervous as hell before publishing this piece, I was terrified of the negative response it could provoke. Thank you for sharing the fact that I am not alone in feeling like this.
I am no more inspirational than you are living with the difficulties you face. Am I a gobby so and so that can’t keep her trap shut ? Yes that is highly likely!
Thanks again for taking the time to leave a comment, thank you for reassuring me that I am not the only one who has these thoughts when reading stuff on social media.
I hope that you have some good days soon, I know how rare these can be.
LOve to you too xxx
Gobby or not, that post echoed many of my own feelings. Far better that you release those feelings instead of bottling them all up & exploding xxx
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Thank you Mrs Hippy Geek xxx
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My daughter has similar feelings , has lost friends due to her illnes, at only 38 and unable to have children,-due to her conditns ( too risky ) she finds it hard 😟 Is forgotten about by friends who have gone on to have families, or-one ‘friend ‘ invited her to a ‘ mother and baby group ‘ to socialise 😧 Knowing my daughter can’t have children. 😒 Her life is lonely .
I, on the other hand, have adapted, was adapt or go under. We all handle things differently, makes us humans and unique.
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