It’s doesn’t matter how long you’ve been living with your illness, or whether or not you’ve experienced something similar with previous flare-ups – The reality is that when symptoms increase or worsen, it’s scary.
Living with chronic health conditions leave you vulnerable. On the days my pain is so intense that I can’t think about anything else, my mouth is full of ulcers and no matter how much rest I get l, I still can’t physically stay awake, on those days I’m not just scared, I’m terrified.
- I’m scared for a few reasons one of them being, I wonder if this is it, is this the new level of disabled at which I must live the rest of my life.
- I wonder if it’s something else. I could bet, almost every chronically ill person alive will tell you, it’s common for us to ignore worrying symptoms such as chest pain or numbness. We don’t bother trying to wrestle with the traffic wardens of the NHS, (GP receptionists – I said what I said) having to beg for appointments. We’re used to being in pain. We soldier on, albeit miserably, but that doesn’t mean we’re not scared. Wondering if this time the chest pain really is a heart attack or the migraine is a stroke. We spend our time debilitated simmering on if maybe our pain is being caused by something even more malign.
- I’m scared because I know it’ll always be this way. Sure there may be periods when I feel better on a sliding scale, ultimately though, I know this is my life. The cycle of up and down and baseline to unbearable will continue for the rest of it. That’s some scary shit to have to live with.
- I’m afraid my people will eventually give up on me. My husband, my friends. The cancelling plans and feeling constantly burdensome to those you love, is tragic. The feelings are always there in the back of my mind. I spend hours ruminating on if this time they’ll reach their limit of how much support they can offer me. It’s not easy being a sick person and it’s not easy on my loved ones either. It’s not my fault, but it doesn’t make it any less worrying.
- I’m scared my medication will stop working. When you are living on pharmaceuticals to try and reclaim some semblance of a quality of life, there’s a constant nagging, and valid fear that they will become ineffective or be taken away. It’s a dependency that I never asked for.
- I’m afraid people will think I’m faking – I often struggle to articulate how awful I feel when my symptoms are exacerbated, because ‘I’m exhausted’ sounds a lot like I’m tired and ‘my whole body aches’ sounds like maybe I just did a work out or played sports – and because of that I fear the judgement of others. Fatigue isn’t the same as being tired and being in chronic and relentlessly agonising pain isn’t the same as post workout aches, but to be able to articulate the level of shit you’re feeling, really isn’t as easy as some might assume.
- I’m scared my kids will resent having a poorly mum. I spent five days this week in bed at my mums. I’m thirty-five with two kids and there were five days this week I couldn’t care for them. Not only could I not lift my eighteen month old son, I couldn’t drive my daughter to school or stay awake long enough to read books with her. That scares me. It scares me that they’ll grow up feeling I was absent.
It’s hard. It’s harder when you’re met with judgement, ableism and misrepresentation – eg: Sounds like a horrible virus….. no, this is just my life. Or, you were fine last week…. Yep and things change. What do you think caused it?….. Perhaps something, perhaps nothing. I have a lifelong health condition I get sick often.
I wrote this post to try and articulate my thoughts and fears around the latest of flare ups I’ve experienced. I know better days will come again and those are the ones I live for, but in case you’ve ever wondered if being chronically ill is something you just get used to – it isn’t.