Topic: The impact of exertion on chronic illness, how ways of framing the experience can help or hinder relationships. Some swear words.
Estimated reading time: 5 minutes
I was browsing my Facebook feed this Sunday afternoon when I stumbled across a post by someone whose spouse suffered from chronic illness. “My partner has CFS/ME, but I don’t. How can I feel less lonely when my partner doesn’t want to do anything?”
The post got me thinking. A common problem I see with friends and family of chronic illness sufferers, particularly when they’ve only recently been diagnosed, is an approach of won’t rather than can’t.
In particular I’m referring to conditions like CFS/ME, fibro, EDS, conditions which not only are invisible but have very few outwardly explicit signs of suffering. When a chronically ill person says that they’re feeling unwell, you have to take them at their word for it. When they say they’re too ill for something, you have to accept that, even if to your eye they may look fine.
You might suggest an outing, and they say they don’t want to do it because of their condition (I’ll get into how the specific wording of the sufferer themselves can also contribute to this in a bit). You’re left disappointed, and although in your mind you know that they have a “good reason” for not wanting to do it, your heart goes “But why? Don’t they care enough about me to want to do this fun thing with me? Why don’t they want to do it with me, even if it’s unpleasant, just once in a while?” After all, you do unpleasant things all the time for the people you love, whether it’s doing the dishes or enduring being dragged along on a painfully boring shopping trip.
Here’s the thing. Yes, they could do it. But they also can’t do it. And it’s definitely not about wanting to or not wanting to. Confusing? I’ll try and explain.
Chronic illness sufferers themselves fall into the trap of won’t not can’t. Take CFS/ME for example, which I suffer from. My condition is characterised by chronic fatigue, which varies (sometimes unpredictably) from day to day. Oftentimes days aren’t particularly bad or good, but somewhere in-between. CFS/ME is also characterised by post-exertional malaise, a fancy term for “feeling really shitty after doing things, more than a healthy person”. Usually the recovery time for an activity is more than a healthy person would have to go through.
For an able-bodied person, an outing to a restaurant for dinner might mean you have to sit down for half an hour when you get back to wind down, and you might be yawning until you go to sleep. For a chronically ill person, the same outing might mean being unable to get out of bed for three days afterwards.
If my partner asks me to go out to dinner, and it’s a bad day for me, sure, I could accept. With my CFS/ME it’s rarely that I can’t physically do anything (it may be different for other sufferers). I can usually force myself to get dressed, walk out the door and go to the restaurant.
But what if that means spending three days housebound afterwards? Is that a reasonable price to pay for one dinner? Should I have to make that sacrifice in order to please my partner that day? Depends. If it’s the most special dinner ever, an anniversary or a birthday maybe, and my partner would be extremely disappointed if I didn’t make it (although he would never blame me or attempt to guilt-trip me), I might make the judgement call that the recovery time is worth the emotional benefit. But most of the time, if it’s just a regular dinner, then no, it’s not a reasonable price to pay.
I can’t just give up three days of my life for one dinner. That’s three days I won’t be able to do anything else I want to do, three days I won’t be able to do my illustration work. I can’t just give that up for something that isn’t super special, and would anyone? If instead of going out for dinner, your partner suggested you lock yourself in your house for three days, you wouldn’t say yes. Not only would your mental health suffer, but how would you go to work? Go to the shop to buy groceries? it’s not just about not wanting to, but it’s also about the fact you can’t.
I still struggle with saying that I can’t do something. It’s easy to get mixed up with “can’t” or “don’t want to”, because sometimes you don’t even realise that the real reason you strongly don’t want to is because you know you can’t cope with the recovery time.
For friends and family of chronic illness sufferers, it can be hard to see this struggle that every chronically ill person has to go through whenever they’re asked to go to something they know they can’t do. And if they phrase it as, “Oh, I don’t want to do that, sorry,” then it’s understandable that friends or family might feel rejected.
It’s okay to feel disappointed! If you were hosting a birthday party and your best friend said they couldn’t make it because their dog died, you’d still feel slightly disappointed, even if you’d also feel worried about them, and understand completely. It’s a little like that with chronic illness. It’s not that your friend, whose dog just died, couldn’t make it to your party if they really wanted to. But they’d be spending the whole party feeling like shit, they’d probably not be very good company, and they’d have to sacrifice time better spend to sorting out their pet’s cremation and so on.
It can help you feel less rejected if you phrase it in your head as being less about won’t, and more about can’t. “They can’t do this” can feel a lot less like it’s about you, or that they don’t want to spend time with you, and can help you understand that it’s out of both your and their hands. Sometimes bodies don’t cooperate! And with chronic illness that sometimes can be a lot of times. If someone had the flu, would you think they didn’t want to come out with you, or that they can’t?
Working with your chronically ill loved one to agree on phrasing things more as can’t than won’t, will help with feelings of guilt, burden, disappointment and regret on both sides. Give it a try. You’ll be surprised how a little change can make a big difference.