Today I received the following instagram comment in response to this video “Please, can you stop milking your chronic illness…talking in a mopey voice and putting a frown on your face isn’t going to give you the attention you are seeking.”
She continues “…I’m not dismissing the fact that chronic illness manifests different in different people but it just seems weird to me how some days you can’t walk and other days you are full on jumping around on mountains, in forests, climbing stairs, travelling to a whole bunch of different countries, and what not.”
Please note – I have no hate for the commenter. I do not believe she is a “troll”. She is only sharing her perspective and I respect that. I also know that I have a long way to go when it comes to creating videos. I am new to sharing my story in this format and there is always going to be a learning curve when trying something new. Honestly, I appreciate any feedback I can get – good or bad.
So why did I post those comments on youtube?
I think the majority of us can relate to the feeling of being judged/questioned for our (at times) erratic symptoms. Chronic illness looks different to all of us. It can change from hour to hour and from day to day. This can make it confusing to not only others, but to ourselves as well.
This is not the first time someone has questioned the validity of my symptoms and honestly, I can’t blame them. Chronic illness is confusing! One day I am in a wheelchair because I can’t walk further then a few steps without passing out while other days I can run a mile.
From the outside looking in, it looks fake. From the inside looking out, it hurts, a lot.
From the outside looking in, it looks fake. From the inside looking out, it hurts, a lot. It’s hard not to start blaming yourself for your ups and downs – NEVER BLAME YOURSELF FOR YOUR ILLNESS OR FOR A FLARE. And it’s easy to start questioning yourself. “What did I do wrong today? Yesterday I felt great and now I feel horrible, I must have done something wrong?”
The truth about my chronic illness – currently
Some days I feel empowered, while other days I feel like this whole sickness is my own fault! Sometimes I feel like complete crap and can’t push through it and other days I can.
Some days I can walk without assistance (most days now, yay!) and other days I can only walk a few steps without passing out or collapsing from weakness.
Why is this? Well, there could be a lot of things that affect my illness. Did I sleep the night before? What about the night before that? Lack of sleep is a killer for me. Am I sick on top of my normal sick? (That’s the worst!) Did I just get home from a trip? Am I dealing with a death in the family? Did I just have a miscarriage? Did my best friend just tell me she doesn’t want to talk to me anymore?
(Note – Some of this also has to do with the fact that while traveling I take medication that I try not to take at home – trying to avoid serious side effects. I also do not work while traveling and working takes a lot out of me)
There are so many things that can effect how our illness manifests on any particular day.
How do you guys explain your symptoms to others?