7 Sides of My Chronic Illness Most People Don't See
I’m always very open and honest about my chronic illnesses (or at least I try to be), but there are still sides of my condition not everyone is aware of. Why? Because my health makes me quite vulnerable and only people who live with me see me at my worst. At the moment I live with my boyfriend, but when I was living at home, my mum, Pops and brother knew exactly what I deal with.
You never know what happens behind closed doors, but I’m going to tell you a few things that appear often in my little world of pain.
1. Apologizing for being a burden and feeling guilty
I do this so often that “sorry” might as well be tattooed on my forehead. If I’m having a particularly bad time and my boyfriend or family member is looking after me, I can’t stop apologizing. They’ll get me a drink; I’ll apologize. They’ll get me a hot water bottle; I’ll apologize. They’ll hold my hair as I throw up; I’ll apologize. Do you get the idea? If I wasn’t chronically ill they wouldn’t have to look after me the way they do, so I feel I have to keep saying sorry for putting them out. Sorry because I can’t look after myself. Sorry because I’m guilty for putting them out. Sorry and guilty. I know they don’t mind and they’d walk through fire for me, but something in me feels like I have to keep saying it.
2. Saying “thank you” too much
Similarly to apologizing, I’m always expressing gratitude, mostly way too often. I’m usually sobbing while thanking and apologizing simultaneously. My boyfriend tells me I don’t have to do either as he’ll always look after me, but I still feel like I need to thank him. I guess I’m mainly grateful to him for not walking away when it gets tough.
3. Worrying
I’ve always been a worrier but when it comes to my health, I’m ridiculous. “What if I fall?” “What if there’s no wheelchair access?” “What if I can’t go?” “What if I’m in too much pain?” “What if someone is rude about my disability?” “What if…?” I’m trying my best to work through this but my health is a massive part of my anxiety.
4. Crying and screaming
I’m not really the crying kind, but when I’m in a particularly bad pain flare, I cry and/or scream. Sometimes even breathing can hurt and I’ll gasp in agony. I try not to let my pain get so bad, but when I’ve had a dislocation or an accident, I have no control over it. I feel like my whole body is being attacked and I often end up in bed in tears. I hardly ever cry when I’m in public, even though I’ve wanted to on multiple occasions. I also just sometimes cry. Not because of pain but because I’m sick of being sick.
5. Intense anger
When you’re in pain day-in and day-out, it gets very tedious and so bloody exhausting; naturally I can be irritable, verging on Hulk levels. I will bite your head off and I will regret it later. I’ve been in pain every day for 17 years so I’m bound to get pissed off. I know it doesn’t excuse me for being nasty to my loved ones and I always apologize, but sometimes I forget they’re not mind-readers and unaware of how bad my pain is on a particular day.
6. Other sickness
Having a really bad pain day usually kicks off all my other conditions; I’ll end up lying on the bathroom floor, crying, nauseous and throwing up due to a migraine, shaking, dehydrated and in agony. The pain is widespread, everything hurts and all of this mixed with stress means I end up a mess. The annoying thing about vomiting is I don’t know whether I’ve thrown up my medication or not, so I don’t know if some of the pain will go away. I end up really anxious and unable to take anymore meds in case I double-dose but in desperate need of more to help with the pain.
7. I can’t speak
I’m definitely not coherent when I’m in a flare; I might as well not even try to speak. Luckily my boyfriend usually knows what I mean or want. I come across drunk, my words are very slurred and my brain doesn’t work like I want it to. I usually can’t summon the most obvious word and it makes me really frustrated. Brain fog is bad but this is horrible.
Do any of these things happen to you?
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Sarah is a 29-year-old writer, originally from Liverpool but living in Northants. She has Ehlers-Danlos Syndrome, Fibromyalgia and Postural Tachycardia Syndrome. She is a trustee for Enhance the UK and columnist at Liability Magazine.
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