About ten days ago, I read on feemail’s Instagram that she was having a flare-up, and I remember thinking how bad things can become and how unfair life can be. I also thought how lucky I was to not have had a flare-up in a long time. And then, of course, it hit me last Monday with all the unfortunate symptoms in the book. Compared to some I’ve experienced, it’s not a bad one: my room is only partially dark, I can still take the dog the to dog park (and then collapse on the bench at the park, and subsequently collapse again in bed when I get home), but other simple tasks that require more concentration (going over my data, trying to restore the 3,500 words lost by the sudden death of my laptop, or even simple phone calls) completely flatten me. If I try, I pay with migraine and nausea, my teeth start shattering, and then my limbs follow.
So, I decided this is the best time to take a look at the movie that has been discussed all over my twitter feed over the past months, and that I have done everything to block out of my consciousness. Between Brexit’s impact on our lives, parents’ health, maternity supervision take-over and all the other little day-to-day problems, there wasn’t enough head-space (or even willingness) to spend time on developments happening in my own illness. Yesterday, I put away my self-protecting barriers and watched the trailer for UNREST, the video in the header of this post.
In a strange way it felt good to be re-connected with my own illness. My PhD research is about another invisible illness, not my own (and I absolutely did that on purpose: I know I could not stay away from bias otherwise). My mother suffers from another invisible illness and G”s mother, again, from another… I felt I could only exist if I negated my illness as much as at all possible. It sometime made me feel like an impostor.
Jennifer Brea, who has CFIDS/ME like me, is an excellent communicator. It takes a lot to be able to reflect on your own illness, let alone on one that you were primed to look at as not an ‘actual’ illness. If you know what I mean, I don’t have to explain. For those who don’t, try next time when you have a bad cold (just a cold not the flu – major difference) to be as collected as she is during her TED talk.
Unrest is in the cinemas in the US, and will come to the rest of the world on 31st October. I would urge you to go see it or – if you can’t take it in the cinema on the big screen – iTunes, Amazon and Google Play have it on demand. If you want to/can, do join in the action, take a picture with #unrest and post it on social media. Write about it, reach out, connect: there is still so much to do in order to shed the universal perception of this being a fake illness. Educate yourself if this is something that a loved one suffers from, and if you have it yourself, never forget that you are not alone, not at the time of the internet where reaching out is getting so much easier than it was when I had the first attack.