Finding Purpose in Life With Chronic Illness

I keep coming across a quote by Margaret Mead:

“One of the oldest human needs is having someone to wonder where you are when you don’t come home at night.”

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I absolutely believe that. But as a person with a chronic illness, I would like to add “and someone to wonder where you are if you don’t get up in the morning.” Whereas a healthy person would be missed at work, a sick person isn’t necessarily needed anywhere, and if they decide to stay in bed, no one will challenge them for it.

Knowing that you’re not needed anywhere can be incredibly hard to deal with.

This might seem like a luxury to some. I’ve had all the comments thrown at me over the years:

“It must be so nice to have so much free time.”

“I would love to just be able to stay in bed in the mornings, you’re so lucky.”

“Some of us have to work, you know.”

Or one of the worst, from a friend visiting in hospital: “I think I’ll check in here too, for a nice rest and breakfast in bed every day.”

I’ve also had doctors ask me what I do all day. I mean, if you wanted to reinforce a sick person’s feeling of uselessness, that’s the way to do it. Because that’s the overwhelming feeling you’re left with; being useless. Even if family and friends do their best to convince you otherwise, on the hardest days it’s difficult to feel like you’re actually contributing anything worthwhile. Of course you can sign up to stuff, even attempt part-time work. The thing is, when you wake up in the morning, you’re never sure whether or not it’s going to be a good day. And if it is a good day, and you push yourself to Do All The Things, your body will most likely punish you for it. If it doesn’t, it’s not just a good day, it’s an exceptional one. And those are unfortunately not the norm.

So you try to make plans, to have something to get out of bed for, but you know there’s a possibility that you won’t make it any further than the couch in your sitting room. I, for one, am pretty fed up with the view from my couch at this stage. And it’s hard when you recall what life used to be like before you got sick. I went to drama school after university, and I tried to keep acting for as long as I could. But I got to a point where I realized that most of my concentration was on keeping my body going, and trying to keep up, and not on the actual work. Acting is hard enough when you’re healthy, impossible if you’re sick. Giving up on it was one of the most heartbreaking things I’ve done in my life, but I had no choice. I had to accept that my condition would only keep worsening, and my life with it.

I don’t think I could ever have foreseen how tough it would be to go from the buzz of a busy actor’s life to the loneliness of a quiet, chronically ill one. Watching friends getting jobs and promotions and talking about work, no matter how tedious they might find it, makes me incredibly envious. Knowing you have nothing to add to that kind of conversation is depressing; it’s disheartening. You feel like everyone has passed you by, and you’re forever stuck in the same spot, with no hope of moving on, in eternal limbo. What you don’t want to do is spend all your time talking about your health, as that’s what you deal with at all other times, so you need to find something interesting to add to the chat. Especially if you’re with someone who doesn’t know you, and you get the dreaded “So what do you do?” question.

So what DO you do? Well, you need to find something. One little reason, each morning. You have to. Of course, most days, as a chronically ill person, nothing much happens. But I make myself get up, have a shower, and put makeup on, every day, even if that’s my only reason for getting out of bed. Go for a walk, no matter how short, if my body isn’t up to a long one (some days I manage 10k,
other days it’s just to the end of the road and back). Have a coffee somewhere nearby, just to be outside, among other people. Bake or cook something, even if I’m tired or in pain. Because I have to. I discovered painting a couple of years ago, which I really enjoy. I got back to horse riding a couple of years ago, which was pretty much my entire life in the 90s. My cousin bought a horse which is kept with another horse that we’re allowed to use, so I can go with her. And my body hates it, but man, does it ever do wonders for the soul.

I always end up paying for it for a few days after, but even my neurologist has encouraged me to keep going. I wouldn’t have been able to start as a beginner, but because I did it for so long, the muscle memory was there. And my brain went “Hey! I remember this!”

I had spinal surgery in November, though, so I’m on a break from it at the moment, and really miss it. I’m well aware of how lucky I am that I’m still able to do something so physical, even if it’s just occasionally. I dread the day when it gets taken away from me, and I know that day will come.

I was never the kind of person who ever wanted to just sit around, and I hate that most days, that’s exactly what I have to do, because my body won’t allow for anything else. My back is killing me as I’m typing this. But it feels good to be doing something, to be putting thoughts into words that others might see and recognize, and maybe they’ll even get some comfort from seeing others go through the same experiences. I do think many of us feel this way. “I can’t work, so what is the point of me?” No matter how much we try to convince ourselves that our jobs don’t define us, it’s that feeling of being needed that we’re missing out on, and it does wear you down, as time goes on. Having to get up and knowing that you have to be somewhere, that you’ll be missed if you don’t show up — I think that’s a fundamental human need.

I don’t have all the answers, obviously. When you’re dealt a serious illness, your life may change mostly, if not solely, for the worse, and you need to find a way to cope with that. Some days you can’t. Those days are tough, I know. But try to think of something to do tomorrow, no matter how small. Find a new show to watch. Have a look through some recipes. Ask if someone wants to meet you for a coffee at the weekend.

Or write an article for The Mighty. You never know, you might be helping someone.