It’s easy to focus on the bad with a chronic illness. I mean, you’re sick. Forever. That’s reason enough to be negative. But recently I’ve realized that negative thinking is not helping me. That doesn’t mean I’m not allowing myself those occasional bad days, or pity parties. I think we all need an outlet like that. But wallowing in misery and constantly declaring ‘woe is me!’ while throwing myself on the chaise long and clutching my pearls? Dramatic, certainly, and while possibly entertaining the first time, it doesn’t do much long-term good.
So today I thought I would write about the ‘upsides’ of having a chronic illness. Things I wouldn’t know and skills I wouldn’t have if I weren’t sick.
1. I am super in touch with my body
This is a necessary skill for every person but can mean the difference between a productive day and forced bed-rest for us spoonies. I’ve learned to read every little signal my body gives me and not to ignore them. I know that if I’m still feeling drained when I wake up in the morning, it means I should take it easy and not do much physical activity. If I see stars in the corner of my vision or feel a little shaky, I need to sit down, drink some water, and maybe have a snack. If my joints hurt, it’s probably going to rain soon. That’s my D-class X-men power. Professor X hit me up.
2. I prioritize self-care
There’s no such thing as ‘faking it’ when you have a chronic illness. You can’t ‘push through’ or ‘ignore it’, so regular self-care is an important part of my routine. I take the time to decompress before bed by reading a book, listening to calming music, or journal. I allow myself time to nap when I need to and rest when I can’t. I even (gasp, I know) try to do some physical activity throughout the week. I’m not at the gym running a 5k; physical activity for me means on a good energy day, taking the stairs if it’s two flights or less, or going for a walk. Having time outside is necessary for my mental health, and the little bits of activity I can handle are good for my body.
3. I’m a great advocate
Anyone in the chronic illness community knows that sometimes, medical professionals don’t actually know best. Sometimes you have to demand care and refuse to leave until you get it. (I did this last year. I demanded an x-ray of my back after a few ‘it’s not necessary’ comments, and guess what? I have progressive leviscoliosis.) I’ve learned how to stand up for myself and voice my discomforts. I don’t care if disability support services deems my disability ‘not substantial enough for accommodations’, I’m going to fight for what I need. (More on my DSS struggles in a later post.)
4. Like a boy scout, I am always prepared
Need Advil? Aleve? Tylenol? Not sure what the difference is between them? I have every pain killer under the sun, know what medication combos to avoid, and I even have water to take the pills and snacks to help soothe your stomach. I also carry Band-Aids (because those moments when you can’t feel your fingers makes it really easy to accidentally stab yourself in the hand), pain patches, and hand sanitizer.
5. I’ve learned resourcefulness and feel no shame
Look, I’ve never been one to care what other people think, nor am I easily embarrassed. I’ll dance and sing along to a song playing over the speakers in a CVS any day. But chronic illness is on another level. Sometimes it’s smaller things, like not having much feeling in my lips so I walk around with a coffee foam mustache. Or having shaky hands so I drop everything I hold. But other times I need to take it easy and listen to my body. And that’s where the resourcefulness comes in. Been walking around the mall but you’re starting to feel over-stimulated and need a quiet place to rest? Department store dressing rooms are the bomb .com. For some reason, Macy’s and J.C Penny’s have dressing rooms in their home goods departments, which is weird, but good for me. Or I take a break and visit the electronics store and ‘try out’ their massage chairs for a while.
Sometimes I have to remember that I’m allowed to do things a little differently in order to function. Like cooking over the stove, if I’m tired, I bring a chair up and sit while I cook. I don’t have to do things the way able-bodied people do.
It’s easy to get caught up and overwhelmed by life with a chronic illness. It’s hard. I wouldn’t have chosen this way to gain the skills I have, but this is my life, and I’m going to work with what I’ve got. Sure I have Chronic Illness, but Chronic Illness doesn’t have me.
Hello friends! I’m entering the dreaded Finals Season. So though I try to update about once a month or so, it might be a little while before you hear from me. Sending much love and positivity to my fellow spoonies!
Much love, ~A💜