What It’s Like Staying Fit With An Autoimmune Disorder

In the past year, I’ve become super-fitness-focused (did I just write that?)—because I was tired of the old, high-blood-pressure-me, and because I have an inflammatory disease called Ankylosing Spondylitis. In short, it’s degenerative, and it can cause my spine to fuse, leaving me with no mobility. It can also affect my heart, eyes, lungs, and stomach. Let’s just say, it seriously sucks.

If this disease were a vampire, it would feed on the sedentary. It looooves the sedentary. Sitting for 20 minutes? Not stretching all day? Not exercising? It’s all like porn to this disease. But that’s just me—there are plenty of other autoimmune diseases that don’t have the same effect, of course. However, research shows that many of these diseases (and remember, there’s over 100 of them!) respond really well to clean eating and tailored fitness regimens.

That’s because people with autoimmune diseases have some obstacles. Many of us are plagued with constant fatigue (you can go to the gym at 5 a.m., but I’m good, thanks), deal with some range of chronic pain or mobility loss (my inflamed joints have banned burpees for life), or deal with complications that prevent us from simply hitting the gym like everyone else.

But this isn’t a sob story! This is a victory story. This is what I’ve learned about staying fit, despite my limitations—and hopefully, no matter your current state of health, there’s something here that may apply to you.

1. Understand what an autoimmune disease does to you.

If I had a nickel for every time someone asked, “What is an autoimmune disease?” I’d be rich. Just kidding—but I’d probably have about $50 bucks, which is not bad at all for a hypothetical situation.

It’s one thing to explain to someone the mechanics of an autoimmune disease (inflammation in the body runs rampant, attacking itself and making the body sick), but it’s another to contextualize what this means for you.

Related: Millions Of Americans Have Autoimmune Diseases—Could You?

Because inflammation is at the core of these diseases, you can know that it’s the culprit behind many of your symptoms. Inflammation makes us tired because the body is fighting its own healthy cells. Inflammation can also cause pain. (Anyone who doesn’t believe in chronic fatigue or pain should stop and look up “Science” in the dictionary, please.)

Which leads me to number two…

2. Listen to your body.

This mantra is often tossed around—but the fact is, it can come off as a mindless platitude. You can trust me, though, that I’m not blowing smoke: You need to listen to your body. Learning to understand when your body needs rest—versus when it could use a healthy dose of movement (whatever that means to you!)—is key. Become a psychic to your poor, ailing body. It will thank you. Ignore its needs, and you will feel worse.

Here’s why you need be more vigilant: People with autoimmune diseases often deal with flare-ups. This word is like uttering “Voldemort” to us autoimmunies—it means a whole slew of things, and none of them are good. Flares are what we avoid at literally all costs, be it taking medicine, getting enough sleep, exercising, eating right, or keeping stress at bay.

Related: I Won’t Let My Thyroid Disease Stop Me From Staying Fit

Healthy people can go hard or skimp on some sleep and still be more or less OK. But for us, going too hard—or not moving enough—can result in a flare. I love my 7:30 p.m. aqua plyometics class (water is divine for anyone with joint issues, since it’s so low-impact!), but there are days when my body feels like it’s got nothing left. Gas tank empty. And I have learned to listen in order to prevent a flare.

Because you don’t always know when you’ll be too tired to muster a workout, it can be smart to take advantage of the times you do feel well enough. That could mean breaking into a spontaneous stretch, yoga, or plyo session—or rerouting your weekend plans to include a quick lap swim. I’m not saying this is easy or doable—and it’s a luxury to be able to make room for movement—but it’s something to consider!

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3. Small victories matter.

If you can’t get in a full 30 minutes or an hour at the gym, that’s OK. When I can’t, I try to do a variety of stretch sessions or short walks. Treating my body like it is capable is what matters. This might mean I do five minutes of yoga mid-day, or that you take the stairs instead of the elevator.

The point is, you can do something (anything!). For many autoimmunies, feeling out of control—like the disease is your boss—is the reality. When you can’t predict flare-ups or your reaction to a certain medicine, it’s important to do what you can to reclaim autonomy over your body. Don’t think you need to be an athlete or overcome disease by running three miles every morning despite the pain. Those victories are incredible, but so are the smaller ones.

You’ve got this dumb monster raging inside you, so be a friend to yourself!

4. Use fitness as mental therapy.

Obviously, there’s no complimentary therapy that can take the place of professional mental health care. However, there are ways to augment your mental health rituals—and fitness is totally one of them. Autoimmune diseases are basically free passes to the local pity party: You feel tired all the time, your body hurts, your friends don’t get it, your job doesn’t get it, and your spouse is tired of hearing you complain.

This is why, for me, I like to use fitness to get my endorphins rolling. I feel like I am making strides to feel better, and sometimes this is a key that unlocks that coveted sense of okay-ness. Suddenly, with all those post-exercise feel-good hormones flooding my body, it’s a little easier to feel celebratory and joyful. With time, it’s even made me feel like the disease takes up a just a sliver of my life—and not all of it. Feeling strong, capable, flexible, and in control reduces the number of times I feel badly.

Related: How Fitness Became My Drug Of Choice

But maybe you’re not in a position to get a rush of endorphins from working out—there are other ways to up your happiness levels: meditation, slowly walking in nature, journaling about your gratitude, or simply laughing (seriously, making time to laugh can change your physiology). Taking the time to slow down and care for yourself—in any way—can make a big difference.

5. Make fitness part of your wellness routine.

Maybe this seems insanely obvious by this point, but fitness isn’t an extracurricular to wellness. To me, it’s a part of the wellness pie-chart (which includes eating well and supplementing, engaging in pleasurable activities, using de-stressing tools daily, managing illness (medication, physical therapy), meaningful social interaction, and exercise). Making the conscious effort, day in and out, to move and strengthen your body, can be extremely empowering.

Just having the option to move your body is a privilege, especially to someone with disabilities. For example, when my disease is at its worst, people can become wheelchair or bed-bound, unable to move, turn, or even walk. I recognize that this could be me, so while I have the time to use my body, I do!

I swim or aqua cycle four or five times a week, and it impacts my overall wellness in a variety of ways: It lowers my blood pressure, it strengthens my body, it raises my good cholesterol, and it decreases my pain. (And, not going to lie, because I work out in water I get to buy bunch of awesome, neon-colored bathing suits that freak everyone else in the pool out.)

6. Ask the disease what it wants to eat for dinner.

I have never looked at food like an enemy, and I don’t believe food should be used as a tool for punishment or shame. We are pleasure beings and we like wine, cheese, fatty meats, and sugar. And that’s OK. But these pleasures must be indulged in in moderation, especially with an autoimmune disease.

In fact, research shows that many autoimmune diseases are deeply rooted in gut health, according to a study in Autoimmune Diseases. I know, for a fact, that eating cheese and most grains disturbs my gut flora and can trigger a flare-up.

Related: Shop probiotics to keep your gut healthy. 

There’s a two-fold benefit to eating well and eating for your body: One, it keeps you fit so that you can stay moving. Two, it keeps you energized and feeling good. Three, it keeps you from feeling shackled to frustrating digestive and disease symptoms.

If I ask my Ankylosing Spondylitis what it wants for dinner, it says salmon, avocado, arugula, and cauliflower. If I ask myself, Myself says pizza and cookies. You have to get in between them and figure it out!

7. Supplement for you.

People always say “take your vitamins and supplements!” and there’s a great reason for it. Whether you’ve eliminated food groups (something us autoimmunies do a lot in search of the least inflammatory diet) or are simply looking to increase health by getting more of the good stuff, supplements can make a big difference.

Research what works for you. I know that fish oil has been found helpful in patients with Ankylosing Spondylitis, for example. Start with a multivitamin to fill in any nutritional gaps, and work with a functional medicine practitioner, if possible, to identify what else might work for your body and your autoimmune disease.

Related: Shop joint health supplements to keep your body feeling its best.