In Conversation: Exercising with Chronic Illness

chronically lit editors
Image description: Two women editors of this site sit in chairs.

Jay: I recently wrote an essay about exercising with chronic illness for MTV Fit and that led to us talking about the topic. The basic issue I face is that I essentially need to exercise daily or near-daily to feel functional, but many types of exercise and too much or too strenuous of activity will flare up my illnesses (fibromyalgia, migraine, IBS, POTS, anxiety), creating a difficult cycle.

Annalise: Exercise is something I’ve struggled with, too. Having Crohn’s, a lot of my symptoms cause me to become dehydrated easily, so running and sweating a ton can severely dehydrate me pretty quickly and lead to further issues like headaches and fatigue.

Jay: Migraines were my first major barrier to exercise, about 12 years ago. But for reasons I’ll probably never understand, exercise no longer triggers headaches for me. Now, it’s more likely to trigger lightheadedness or shortness of breath during the exercise, and pain or fatigue in the days after.

Annalise: For someone who’s had Crohn’s for ten years, it really took me a long time to put things together, although I think I was in denial about my condition for a large portion of those years. I’ve tried everything from outdoor Crossfit, track & cross country (in high school), trainer-based apps like SWEAT, before realizing that I just can’t do high intensity workouts. Yoga, I think, is what’s been able to most make me feel fit, happy, and healthy.

What has your process been like?

Jay: The year before I developed chronic migraines–which were the beginning of my life with chronic pain–I was running 5Ks monthly, practicing Jiu Jitsu twice a week, weight lifting, swimming, using the elliptical machine, and walking two miles a day to get to and from work. This was when I was 23-24, over ten years ago. I hadn’t been very into athletics in high school and college, so being super active was a new experience for me. I felt like as soon I really started enjoying fitness, it was taken away. Since then, I’ve tried many types of exercise then slowly had to admit I couldn’t or shouldn’t do them.

Annalise: That’s what’s really hard, right? Coming to terms with not being able to do something and acknowledging it. For both you and me, our illnesses are invisible which means we are able to pass as able-bodied to other people and to ourselves. I’ve thought: I’m young, I look healthy, therefore I SHOULD be able to do these things (Crossfit, running, whatever). It’s been a long road but I think I’ve finally sort of accepted that hey, maybe I don’t run, I walk. And that’s okay, too.

Jay: I’ve never really enjoyed running, even during those two glory years of doing 5Ks, but for some reason, running was the hardest thing to admit I couldn’t do. I viewed the ability to go running as the mark of a healthy person. I kept trying, for years. I couldn’t understand why people who seemed to be less fit than I was could run longer distances or faster speeds. I’d be huffing and having chest pain and about to pass out and not even recognizing illness was a factor–I just blamed myself and thought I wasn’t trying hard enough or something. Last year, when I finally got the POTS diagnosis (I’d probably had POTS for almost 25 years), the cardiologist was like, “You should never go running!” It was such a relief, but if I’d listened to my body, I would’ve known already.

What sort of symptoms have you had from exercising? And how did you recognize they were illness-related and not simply your fault?

Annalise: I…never enjoyed running. I think I mainly did track and cross country because my older sister did, ha ha. But anyway, sometimes running actually upset my stomach and both running and Crossfit, these more high intensity workouts, made me lose a ton of water. It’s easy to tell people to hydrate themselves and drink a lot of water, but that’s hard for even people without Crohn’s to do. The problem is, if your stomach is getting upset a lot, you’re losing a lot of water and THEN you’re sweating out more through exercise making yourself even more severely dehydrated. At least in my case. Also with Crohn’s, many people experience joint pain due to the excess inflammation (i.e. why people with Rheumatoid Arthritis are also on Humira like some people with Crohn’s!) so running or exercises that can put weight/pound the joints just makes your body hurt even more.  

Jay: That makes sense. I have to remind myself that running is hard on the joints of even “regular” people. Most runners eventually turn to swimming or bicycling as they age, and most of them deal with ankle or knee injuries along the way.

Can we talk about the psychology of all this a little bit? One thing I’ve noticed with exercise, and all areas of life, maybe, is I’ve had to do these little mental tricks, little comparisons to help me not feel bad. Like even now, I feel the need to point out that no one can run forever without injury. Why? I do accept that I have illness and limitations. And I don’t even enjoy running or want to spend time on it. I guess on some level, I’m bothered there’s something I can’t do. Is it an unhealthy selfishness? Perfectionism? Or a healthy reminder people exist on a spectrum and share commonalities? Do you experience this?

Annalise: I definitely experience this, and I think it comes by way of our natural competitive stance as human beings. From an evolutionary perspective, we want to be the best, physically and mentally, so that we’re chosen to procreate etc. etc… I think, even in modern times, or especially in modern times, we, as humans, haven’t adapted past this point of needing to seem like we are the best versions of ourselves, and the best versions of ourselves might be ones we envision as being able to do everything, like running, for example.

Jay: Yeah, plus we live in a capitalist society and competition is the foundation of capitalism. I like the phrase “best versions of ourselves.” I think it’s good to strive to be the best version of myself, but I have to determine that myself, not through comparison to others. When I was overheating while running and on the verge of fainting miles away from home, I was absolutely not the best version of myself. Gentle, low-impact exercise on a daily basis is what helps me be the best version of myself, even though it took me years to realize it (or, maybe more accurately, surrender to it).

What do you do these days for exercise? And did that require you to shift what you previously thought the best version of yourself was? I think this part of the conversation applies to people without illness, too. I feel like many people I know have some ideal in mind in terms of fitness and feel ashamed that they aren’t meeting it.

Annalise: Whew, I have a lot of thoughts about what it means to be fit, what it means to be healthy, and all of the fit-spiration that’s happening on social media. Some of stories I see are amazing! Like, wow, that’s great that you tried this program, that you’ve lost weight, and that it worked out so well for you. But these stories also negatively affect me because they make me feel like I should be doing what that person is doing, and I’m *still* in the process of reframing and saying to myself, “No, that plan’s not going to work for you.”

For me, yoga has been what’s worked best for me. It’s not too rigorous, and if you want it to be, you can make adjustments to poses to make it harder. With yoga, I’m less likely to be in danger of overheating, over-sweating, or dehydrating myself to a point of exhaustion. Dually, the meditative part of yoga really helps me in terms of relieving stress and anxiety. All around, this is what’s been best for me as a person with Crohn’s and anxiety.

How about you?

Jay: Currently I use a rowing machine every morning. The cardiologist recommended I buy either a rowing machine or recumbent bicycle when I received the POTS diagnosis, because those don’t require standing up, which triggers lightheadedness. I found one for $250 online and had it delivered a few months ago. It works out all muscles in my body and I can go as fast or slow as I want. It’s in the corner of my bedroom, which is perfect because I deal with fatigue, so I don’t have to exert energy traveling to a gym.

I’m also a fan of yoga, but had to do mental reframing and I now call it “stretching.” Somehow a goal of “stretching” every day doesn’t stress me out the way a goal of “doing yoga” every day did. I try to stretch for at least 10 minutes, and on days I feel up to it, I’ll do a yoga video online. I don’t attend in-person classes anymore, at least for now, because I avoid all standing postures.

One thing about yoga–that seems to be the go-to exercise people mention when they want to give advice. As in, “Oh, you have chronic illness? Have you tried yoga?” What do you think of that or say to that? On one hand, yes, it totally helps. On the other hand, “helps” means something different to me than it probably does to people who say that kind of stuff. It doesn’t cure me. It loosens up my muscles so I’m less stiff and in slightly less pain, but stretching hurts!

Annalise: I think that everyone’s body is different. Yoga works for me, but it might not work for other people, and there are a lot of different types of yoga and instructors, so it takes a while to find a place you like, a teacher you like. It takes a while to find a groove of what works for you. I wouldn’t recommend yoga for everyone. I would say, sure, try it if you think you’re able, but I’m no expert, physician, or nutritionist, so I hope any readers do take these conversations as something to think about but not advice by any means.

Jay: Agreed. Disclaimer alert: we are not medical experts nor are we giving medical advice. We’re chatting about our experiences and sharing them. Even though I’ve struggled with my exercise tolerance, I know I’m lucky in the sense that I have a higher tolerance for exercise than many people with fibromyalgia or POTS have.

What I was more trying to get at with my question is sort of a catch 22 I’ve experienced, which is, exercise helps me. A lot. If I don’t exercise regularly, my illnesses become much worse. But I also feel irritated (or, sometimes, enraged) by people who give the unsolicited advice to do yoga or any exercise. I feel like they’re implying it would cure me, or my illnesses are a result of me not exercising enough. Have you experienced anything like that surrounding exercise? Any conflicts or pressure socially?

Annalise: Not really in terms of exercise, but I think people are generally trying to be helpful when they ask things like: Have you tried x, y, or z? I know this can be frustrating. Oftentimes it’s like, yes, I have tried that and it didn’t work. But sometimes instead of saying that I just nod, smile, say I’ll try it because it’s easier and less confrontational than telling someone that I’ve tried everything under the sun and no it hasn’t worked.

Jay: That’s nice of you. I think I might have more simmering anger that I need to sift through, mostly from my earlier days of illness. I was almost angry to realize how much exercise helps me, because that made me feel defensive toward people who’d suggested it. Of course I’m grateful for how much it helps me–it’s free!–but those sort of suggestions seem to imply a blame, as if the person is saying, “Your illness is your fault.” But that’s an entirely different conversation…

Jay Vera Summer and Annalise Mabe are editors of Chronically Lit.