Living with chronic illness/ongoing health issues is like constantly coming to terms with not being who I thought I would be, who I could be if I wasn’t struggling so much with my health. It’s a relentless grieving process for how my life is compared to how I thought it would be and – most painfully – how I want it to be.
Something else I’ve noticed is I have to almost constantly do things other people would usually frown upon or would be encouraged not to do, but I do them for self-care reasons rather than because I’m “lazy.”
I feel a lot of shame about it. I feel inadequate. I feel like a tenth of the person I aspire to be. I feel like a let-down. I do let people down. And I hate it. When friends joke about my unreliability and inability to fully commit to be somewhere at a certain time, I laugh, but I never find it funny. It hurts and I feel sad. It pokes that wound in me, because I’m constantly battling with what I want to do and what I can do. I realize everybody probably experiences this a bit, because we all have our limitations that being a human brings (no one can do everything they want to do!), but it just feels — and is — so much more extreme when you are battling with such a limiting chronic illness that stops you from being able to do the basics you need to do to survive life, let alone anything extra on top of that.
Here are some of the things I’ve noticed I do as self-care that are usually shunned, judged or avoided:
1. I’m almost always late.
I work out what I need to rush for – doctor/hospital appointments, etc. (and I’m usually always 10 minutes late anyway) – but anything else, like a party or a meal at a mate’s, where there’s flexibility on my arrival time, I give myself 100 percent permission to just get there whenever the fuck I can get there. This weekend I was five hours late to a wedding! I felt shit, but I knew there was no other way it could have been possible.
2. I very rarely make definite plans.
One of the most frustrating things about chronic illness is the unpredictability of it – I never know how I’m going to feel. Sometimes I can do stuff, sometimes I can’t, and it’s so bloody confusing. Even after almost 10 years of health stuff, I still haven’t figured it out, and I don’t think I ever will. It just is so unpredictable.
If I do make definite plans there’s always the possibility I might have to cancel last minute. I try to make sure friends know I might have to pull out. However, often – when the shame or my desperate desire to be able to do more than I can actually do is so intense – I overcommit and say yes to something knowing deep down I can’t do it. And it usually always ends up worse, because I say yes, and then have to cancel. Or, I push myself and do whatever it is, regardless of the fact I can barely stand up, and pay heavily afterwards and during (I’m always in horrible pain, but when the pain is a 10/10 I never enjoy anything I’m doing, so it’s better to be in bed dealing with FOMO knowing at least I’m taking care of myself, however shit that is).
3. I can’t do the things I want to do to be able to do to support friends.
My friends are amazing and support me so much. I want to be able to do that for them, too. Whenever I share this with friends, they always say, “But you give so much!” Maybe I do, but I want to be able to help friends move house, to accompany them to appointments like they do for me, etc. Instead, I give in the ways I can give, I just always want these ways I give to be the ways I want to give.
4. I live in a mess.
For the first time in my life I’m paying for a cleaner every other week, but until this point my room/house has almost always been a mess. I’ll never be “tidy”, but I do prefer to not have my entire wardrobe scattered on the floor around me.
5. I don’t keep on top of life admin like I need to.
Like lots of people, my to-do list is never-ending, and lots of people probably leave things until the last minute, but unlike people without health conditions, I can’t just cram everything in when I get a spare 15 minutes. I have to wait for my symptoms to not be so horrible and I have the cognitive function to be able to focus on important things (which usually just lasts for a few minutes before the ability diminishes and I need to check out again). And these moments are so few and far between anyway. Usually I can only do one thing at once, because I get so overwhelmed I need to take a long, long, break. It’s so frustrating!
6. I don’t do the things I need to in order to heal.
Talking of lists, when you live with chronic illness, the list of things to do to help myself heal is extensive. There is so much I could be doing for my health that I’m not. I can often barely get out of bed, so when I can I want to use that energy to do something fun rather than prepping healthy food or doing whatever it is I could do to help myself. Fun is so important too, I’m just constantly overwhelmed with all the things I could and probably should be doing, and would benefit from doing for my health.
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Thinkstock photo via Strekalova.