For years, conventional wisdom has been that regular exercise is good for everyone regardless of what state your body’s in. That’s mostly true, but for some people, chronic illness and exercise seem completely incompatible. Starting to get active is much easier said than done — and throw in pressure to work out X days a week for X minutes/hours, it quickly becomes a non-starter. I’m going to share something with you: sometimes, exercise is hard for me. Really hard. I’m also going to tell you how much I get it that having a chronic condition makes it much more difficult.
For years, I’ve been going along with the “no excuses” mentality, saving websites and sharing memes that talk about pushing yourself to improve. Most of my adult life, I have tried to watch my diet, consumed plenty of water, drank very little alcohol and made a point to keep a regular sleep schedule (obsessively so, actually).
Then, why am I so tired?
Sometimes, I’m really on track with my lifestyle; sometimes, I fall flat on my face and really struggle to get back up. When I’m in exercising mode, I feel confident, strong and my mood is good. There is one lingering problem, though, through all of it. Fatigue is always there, underneath, to one degree or another. I’ve always tried to push through it because that’s what you’re supposed to do, right?
A few years ago, while taking fantastic care of myself, regularly exercising, my fatigue got progressively worse. This was despite feeling really good, emotionally — I was handling some serious situational stress like a champ. “The fatigue should be getting better, not worse,” was my constant thought, and man, was I discouraged. My doctor had the same thought too when I told her what was going on. She actually thought it was strange enough to delve into the issue after decades of complaining about fatigue to my other doctors. I am forever grateful that someone finally took it seriously. I have some answers once and for all — a diagnosis of an autoimmune condition called Sjögren’s syndrome.
New normal, new approach.
Having a diagnosis and understanding the “why” is a huge relief. It removes the emotional layer of thinking I was doing something wrong and thinking the way I felt was somehow my fault. Lifting that layer doesn’t help my fatigue, though. My years-long quest to use exercise as a cure-all obviously hasn’t worked, so it’s time to pivot.
Now that it’s sinking in that I will spend the rest of my life stuck with this, I finally realize trying to “exercise myself better” is like trying to fit a square peg into a round hole. I need to learn how to file down the corners and adjust what I do to fit into reality. This calls for a new start.
The hard stuff.
First, let’s talk about how exercise is just plain harder when you have a chronic illness.
Arthritis, fibromyalgia, all that stuff. One of the very things — pain — that gets in the way of exercise can be relieved by doing the thing that’s so hard to do. Honestly, I have enough experience with this one, so I don’t have too much trouble getting past the pain to move a little so I can… well, get past the pain.
2. Chronic fatigue.
This really is the tough one for me. So many doctors poo-poo the complaint of fatigue, and the accepted reasoning is that you’re too tired to exercise because you’re out of shape. I can attest to the inaccuracy of that. By the time my doctor took me seriously, I was in great shape. That’s probably the only reason she did listen. I’m not alone, as I’m sure you know.
A few years ago, multiple federal agencies charged an expert committee to review evidence about chronic fatigue and exercise, and make recommendations. Their findings are pointing to what we all knew. Making someone with genuine chronic fatigue exercise to build up endurance doesn’t work. Patient reports combined with recent research about our energy being depleted more quickly led the CDC to revise their guidelines about exercising with chronic fatigue. This was after years of recommending vigorous exercise to combat the fatigue, which wasn’t working.
Unfortunately, the message is slow to get out to the medical community who provides treatment. Researchers are just starting to get it.
I won’t give up.
If exercise makes me so tired, why would I want to do it? Here’s why:
1. Pain reduction.
With many chronic illnesses, pain is almost always a given. Mine is no exception. If I’m exercising, regardless of how fatigued I am, my joints feel better. Also, since I sit at the computer so much, I get the all-too-common neck and shoulder pain. That also improves when I’m active. When I stop moving, my shoulders, knees and hips remind me pretty quickly.
For real, folks. Regular activity not only makes me feel better while I’m exercising, but it makes dealing with stress in general much easier. It’s my go-to coping strategy when the going gets tough. The bonus is that an improved mood all by itself can reduce the impact of chronic pain. It’s my favorite twofer of benefits! If I can’t exercise when I’m anxious, frustrated or feeling down, it’s a double-whammy. Not only is my method of getting through rough patches missing, but the beneficial after-effects of it disappear too.
3. Disease prevention.
Yes, I know: “But you already have one, so you’ve lost the fight.” No, I haven’t lost, and the last thing I need is another thing to deal with! Not only does my family history include cancer, heart disease and dementia, but having autoimmune disorders (chronic inflammation) also increases my risk of those things. I’ll pass on any more medical problems, thank you very much.
Chronic illness and exercise can coexist.
I really want the benefits of improved mood and reduced pain, so it’s worth getting active despite my fatigue. Realistically, though, I have to figure out how to do it without it backfiring on me. So, it comes down to: How do I work on pain, but work with fatigue? Other people have figured out how to be active with illnesses like mine, so I know it can be done. Therefore, it’s my time to figure out how for myself.
I’m throwing my old goals out the window. I used to be disappointed with a day below 12,000 steps, or a day without hitting a fitness class on top of walking or jogging. Not anymore. I am embracing the idea of pacing myself through the day now. It’s hard because I tend to be a bit driven and have trouble reigning myself in. I won’t rehash what this website says (it’s excellent — read it after you finish reading this) but for me it boils down to these things: rest between activities, stop before you feel like stopping, do less than you think you can, know your limits and plan ahead for all you’re going to do for the day. If you’re familiar with the spoon theory, that last one makes total sense.
One handy strategy I came across in researching for this was focused on heart rate. This website recommends keeping your heart rate at 60% of your max heart rate (the upper limit of what your cardiovascular system can handle) when you exercise. Here’s how to calculate that: 220 minus your age = max heart rate. Your limit is 60% of that number.
How to keep going.
When you’re used to exercising to lose weight, it usually takes a while to reach your goal. That’s hard enough. But when you can’t push yourself to reach a goal like that, how do you keep going? Go for the short-term rewards.
Pay attention to all the little “wins” and payoffs. For example, is exercise time a good “escape” for you? Is it fun to do with a friend? Is it a chance to listen to your favorite music? Do you notice a small reduction in pain or improvement in mobility? Even just a little? Keep track of what you’re doing and what you’re discovering:
What feels good? What’s fun? What got in the way? What worked to get yourself going? What was too much for you?
Always remember a few things, too. Wear proper footwear, don’t forget to stretch, and listen to your body! Chronic illness isn’t going to rule my life, but accepting I have to live with it the best I can is the first step in taking back control. I hope you can too!
A version of this article was previously published on the author’s website.
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Author: Susan Masterson