I realise this title seems completely backward. Until lately, I’ve spent nearly every day of my life since being diagnosed cursing my chronic condition. Cursing the pain my IIH (Idiopathic Intracranial Hypertension) gave me. Wondering why me? and wishing it selfishly could have happened to […]
A Survival Collective from a Chronically Ill Mummy
No one ever wants to be in pain, to get better and live a healthy life one day would be a dream come true but I’ve also found myself feeling anxious on days I’m doing ok. Here’s why.
It took me the best part of a year to come to terms with my condition, to get my head around the fact that I would live every day in pain and the effect that had on my life. I’d never be that person I once was and honestly I felt like a complete failure. After some therapy I eventually recided with the fact that I probably wouldn’t ever work for someone again. (who would employ someone who couldn’t garantee they could even get out of bed some mornings) Becoming ill meant my focus suddenly turned from working on my career to not knowing what the fuck I was going to do with my life. Before long I began to identify as a “Spoonie”, I found this huge community of people who also identified as the same and I suddenly felt at home. My chronic health became a huge part of who I am. My identity. Who am I now I’m starting to get a bit better? How do I belong in this world? How will I handle people expectations of me now I’m doing a bit better? It’s not like I’m cured but being in a bit less pain a bit less often has sure had an effect on me mentally.
I’m also terrified by the idea of going back to work, the possibility of working for someone else among people who will probably never understand what the past 3 years of my life has been like is scary. Since being ill I’ve pretty much be able to surround myself with people that aren’t judgmental, I’ve kept a small group of friends and pushed away people I don’t get on with, being in a work environment doesn’t afford me the same abilities. I’m scared of being surrounded by judgmental people who will likely ridicule me and judge me when my health deteriorates. Maybe some of this down to past experience, my first job out of uni and before getting seriously ill was exactly the best time of my life and it makes me feel apprehensive about one day going back to work.
I’m constantly worried about people’s expectations of me. Probably the one thing that plays on every Spoonies mind at some point. Society has this unwritten rule that no matter our abilities as soon as we become adults were expected work and pay our way. Something I never really got over as a spoonie and now a mummy is what people are expecting me to do, even more so because for the majority of the time people can’t see my pain. Even are own government have poor ways of coping with and managing chronically ill people, it’s because of this system we had to Birmingham away from my friends and family. To many people go without the help they need because the system expects them to be doing more than they are capable of.
What are your biggest fears? Are people constantly expecting to much of you? Do you dream of going back to work one day?