My world feels smaller now, increasingly so, but I have known it before. On the one hand, I try to focus on anything but my health mentally to get me through the days; on the other, my poor health completely controls every aspect of my life. Perhaps that is why I grasp so hard at any distraction. Being ‘in the moment’ is so painful.
Escapism – Chronic Illness
I shock myself when I consider just how sick I am at present. It has been years since I have eaten a healthy meal, years since I have been capable of caring for myself, and years since I have lived and explored. When I say explore, I simply mean to sit on a park bench, visit a coffee shop…
It’s funny in the most non-funny ironic sense, how normalised we can become to something when it is a reality we have to endlessly endure. I’m not supposed to have spasms on my diaphragm that prevent me from breathing properly, at least, not without being checked out by medical professionals, but here I am, dealing with it over and over. It has become the proverbial straw on the camel’s back, the symptom that has pushed me too far. The fight to be seen, to be believed or to have conditions understood is too demanding, I’m unsure where to find that energy to fight any longer.
A Longing
So I choose escapism. I choose to create. A world where for brief moments I can transport myself and feel a breath of who I once was (while often losing the breath in my chest as a result). It is a complex juxtaposition, to appear so fine, so healthy online, when so incredibly sick IRL. It’s a battle I have physically, emotionally and mentally. The work that I do, physically makes me worse – I’m aware I’m not well enough to do it, I’m aware it makes my symptoms worse. I know it’s not representative of my physical capabilities but it’s a hope that I cling to.
When you have lost everything due to your health and are left in decades-long, well, a perpetual state of grief, you cling to anything that may give you a sense of worth, a hint of who you once were and that is where I am right now. It frightens me (in that it could all crumble overnight – both my body and my hopes for a future) but right now, it keeps me going.
Social Media vs Real Life
I shock myself. A video of me made up to the nines, in glam, is on my feed, yet I lay unable to feed myself in bed. That’s my reality. It can be the reality of anyone with chronic illness and invisible disability. I’d dare to say, that most of us appear different to that post we just made online…
It’s a tricky headspace to live in and one I aim to revisit. I feel a certain sense of responsibility to the younger generation; to speak to the fact that social media is a highlights reel and not real life – I feel that same responsibility to those with my health conditions – because I am not well, but people will always judge by appearance and social media is all about image.
Perhaps one day I’ll show you a BTS. A true BTS, the umpteen support cushions that keep me upright. My team of (family & carer) assistants who I rely on to do everything (they’re the reason I can do any of this!). The really bad times and the normal everyday awful ones too. Perhaps.
I used to speak so openly about my health, or lack of it. The pandemic (and the impact that had on Post Viral Illness) and the personal medical neglect I suffered at that time led me to shut down.
Maybe I’ll be ready one day. For now, if you’ve taken the time to read this, thank you.
Be kind to yourself and let me be your reminder that social media is not real, so if it makes you feel ‘urgh’, close that app.
Read more about my health story here
My beauty IG here and my health IG here (my health IG has been updated much after the medical neglect incident I mentioned above led me to shut down).
