I was diagnosed at age 14 with an autoimmune disease named Takayasus Arteritis (and much later with seronegative rheumatoid arthritis). I talk a lot about this diagnosis and what happened afterwards (i.e. an eating disorder, prednisone, remicade, humira, etc.), but I don't talk much about what was going on beforehand.
The years before I was diagnosed with TA (and before the onset of any symptoms), I was a competitive swimmer. I had been swimming year-around since the age of 8 and loved the longer, more grueling events such as the 200 fly, 400 IM, 1650 freestyle, and 200 back. While I certainly wasn't an "up 'n coming superstar", I was good enough to start thinking about a scholarship to a DI school. Or, at least, this was the path my coaches and I thought we were walking.
That path started to blur when I struggled to finish one lap down the pool let alone an entire 400 meter Individual Medley. All of sudden, my energy levels plummeted, my hands went numb and blue during practices, I sat out sets shivering on the bench, and I wasn't sleeping throughout the night. My coach (as awesome as he was) thought I was simply lacking motivation. That I wasn't trying and needed to get tougher or push through. At the time, I was frustrated... thinking maybe he was right and I'd lost "my edge". And even now, looking back, I can't blame him. When you have an "invisible illness" your symptoms aren't tangible. They aren't easily understood. Heck, I didn't even know what was going on... other than knowing all of a sudden I could hardly bring myself to do anything.
Getting diagnosed with TA gave "formality" and answers to my in-the-pool struggles, though internally I didn't feel much better. Sure, I could still talk about who I used to be in the pool -- and how an illness changed all that. I could share my previous times and personal bests. But honestly? No one cared anymore. There was nothing visible to see when it came to the difference in how I could move. The arteries that were "officially" narrowed? Only the MRI can see that. The fatigue that creeps up my left arm when I've used it too much? Only I can feel that -- and I never know when it'll start. Invisible illness is named so for a reason. Our symptoms aren't the only pain we feel. The misunderstanding -- the ignorant expectations -- can hurt just as much.
I share this part of my story to tell you that fitness and physical activity have always been important parts of my life. Although the movement I could handle changed when I was diagnosed, I was determined to find a way to just. keep. moving. If you're reading this and feeling the same way -- maybe wondering how to move now that you have this extra "variable" to consider -- here are 5 ways to safely workout with chronic illness and autoimmune disease.
(1) MOVE FOR YOUR HEALTH AND NOT FOR YOUR WEIGHT.
This might surprise you as the first of 5 ways to safely workout with chronic illness or autoimmune disease, but it's too important not to share. Many of us (yes, me included) have used exercise as way to lose weight. To tone up. To thin out. To sculpt our bodies. But, especially when trying to workout for chronic illness, this simply isn't helpful.
When we move for weight rather than health, we tend to workout more, adopt "no pain no gain" mentalities, and berate ourselves into thinking if we only worked a little harder....
Simply put, we're more likely to overdo exercise, to workout in ways that may leave us feeling even worse when we started, when moving in order to lose weight or control out body shape. It makes it a lot harder to listen to our bodies and take much needed rest. (Here's why "no pain no gain" isn't the best approach for those with autoimmune disease or chronic illness.)
Moving for health and not for weight involves undoing all of the diet mentality and body image challenges we face as a society. We can't claim we're moving for "health", for "medical reasons", for "healing", for "remission"... when we're really, secretly, subtly moving for "thinness". We've got to break down the societal barriers, fat phobia and the fear of weight gain -- and recognize thin privilege (plus the fear of losing or never have status because of it).
I bring this up first because many exercise programs, EVEN the ones designed not for weight loss but for health, are designed by experts who teach physical activity with emotionally-fueled rules leading the way. Many conversations around autoimmune disease, chronic illness, and movement are full of judgment, willpower, and even blame. (Have you ever felt that shame? That judgment of having an illness? I know I have.)
Some of you may be shaking your head right now, thinking... "Duh Kel. Of course I to want move my body for health not for weight. I want to feel better." And I totally believe you. I've uttered the same sentence and I, too, was working out to feel better physically and mentally... about 80% of the time.
But that 20%? THAT'S what we've got to talk about. Because more often than not a fear of weight gain or a desire for weight loss is at the core of body image struggles and a disordered relationship to exercise.
Even if we're working out 80% for our physical health - to feel better and alleviate chronic pain - we still need to eradicate that last 20% of working out to lose weight. It's the only way we can really CHOOSE physical activity that leaves us feeling good for the LONG run.
(2) CULTIVATE A RELATIONSHIP WITH YOUR BODY.
This sounds cliche, but it has been the. most. important. piece of the puzzle for me when it comes to safely exercising with autoimmune disease (and less pain).
We have to listen to our bodies -- and choose our workouts accordingly.
We have to look for initial warning signs that say we're pushing too hard, moving in a way we can't safely handle, or simply needing an extra day of rest. Because yes, when you're dealing with symptoms of a chronic illness or when you're trying to heal naturally, you probably do need an extra day or two of rest.
Now, as I write this, I get it. This IS frustrating, especially if you're a former athlete like me. It might also be frustrating because you have an "invisible illness" and no one really understands why you might scale a movement, hold yourself back, take an extra minute to rest, or choose a walk around the block instead of a run. I know what it's like to "reign it in" in a world that screams more is always better.
But the truth is.... none of that matters. YOU are the only person who will advocate for yourself in the gym or while working out. Is it worth pushing yourself -- "to look cool", "to get the fastest time", "to do what everyone else is doing", "because you used to do X", "because so and so does it" -- when you'll experience flares or subsequent symptoms that don't go away for hours, days, or even weeks?
I say this with a buttload of love and grace, because I am that girl. I'm the girl who loves to workout.
(If you're a former athlete with an invisible illness like me, then you're probably shaking your head with me! But if you're here just to check a box and motivate yourself to safely workout with autoimmune disease, then you're probably shaking your head AT me. I get it that, too. Stick with me though and remember to read tip #5.)
I'm that girl who is as competitive as it gets. I've done two-a-day practices all my life. So, now? Having to purposefully skip the gym -- even when I want to go? Having to hold myself back, even when I want to set a personal record? Having to stop, grab a sip of water, wait on the sidelines, and pause in between rounds EVEN WHEN I don't "need it"? It's hard.
I've had to learn to ask myself one very important question each and every day. It's a question that reminds me WHY I care about safely working out with autoimmune disease or chronic illness.
"Is what I do during 30 or 60 minutes at the gym worth at least 24 hours of headaches, nausea, and fatigue? Maybe a few sleepless nights, too?"
Almost always, the answer is NO. It's not. (Although it's totally okay if for some reason the answer is yes. We get to choose our actions -- and the consequences that may stem from those actions.)
I've learned that it's great to mentally push ourselves to work out -- especially because physical activity is good for the body and CAN help our symptoms -- BUT (and this is a big but) we must physically respect our boundaries. And, as much as we may or may not like it, those boundaries are different for people like us. Because when those of us with an invisible illness go to the gym, it's not about seeing how hard we can push day in and day out. It's about finding our sweet spot and allowing our BODIES (the ones doing the insanely hard work of keeping us alive despite the cards we were dealt) to tell us when to hold back.
If you're wondering how to cultivate this relationship and figure out how YOU can safely exercise with chronic illness and autoimmune disease, here's what helps me.
It's important that we feel energized by our workouts rather than drained and depleted. Sure, there may be a learning curve when we first start moving our bodies, especially if we took some time off, but we need to take it slow. To ease into things. And that learning curve, or that soreness, should not last. Speaking of which....
(3) TAKE. IT. SLOW.
I believe that one of the main reasons new exercise programs fail is not because we lack motivation, are too busy, or can't do it. It's because we try to do too much too soon - and / or without enough nourishment in between. (Or because we pick a movement, or an environment, we hate.)
You see, when it comes to exercising with autoimmune disease, it's important we don't add TOO much additional stress to the body. And that stress can pop up in the form of overtraining as well as in the form of force and hate. We are far more likely to make time for something we enjoy - something that leaves us feeling good - rather than a movement, or even an environment, that leaves us feeling crappy, intimidated, or not good enough. Furthermore, hating what we’re doing, often because we feel forced to do it for some external reason, can also turn positive stress (even without chronic illness in the mix) into negative stress - and work against our goals.
Which means that, when incorporating new movements or when trying to heal our body, “no pain, no gain” is NOT the goal.
This study talks about physically respecting your body and being sure to avoid overreaching / overtraining. When we do too much too soon, or too much on a consistent basis without proper recovery, the accumulation of training can requires days and weeks to recovery. We are more likely to experience an excess of soreness, flare ups that may take days or weeks to subside, or other overtraining symptoms like fatigue, headaches, and poor performance. (I was overtraining for a while, here's how I knew.)
In addition to taking it slow, it's really important to take the time necessary to learn movement basics and proper techniques. This is, of course, a necessity for ALL exercise programs and workouts -- and so exercising with chronic illness is no different. We want to minimize the amount of stress place on the body as a whole... and that includes minimizing the amount of stress placed on the joints. Working with a personal trainer who understands your specific chronic illness or region of chronic pain (and always under the guidance of your doctor) can be very helpful.
(4) BUILD IN (EXTRA) REST + RECOVERY.
I mentioned this briefly already, but it is insanely important to build in rest and recovery. In fact, I believe it's a non-negotiable for safely working out with chronic illness, chronic pain, or autoimmune disease. Because at the end of the day... We are not like everyone else. Not in this way. (And that's a pretty awesome thing.) We have an extra "ball" in the air. We have an extra variable to take into account.
We are fighting an illness.
We expend more energy more quickly.
We flare up from known and unknown triggers.
Certain "healthy suggestions" simply don't apply to us.
Which means that when it comes to exercising, we simply cannot do what everyone else can do. Or what traditional trainers tell us to do. Because even really great trainers might not understand what is taking place underneath the surface in our own bodies. This is why it's helpful to find one who understands your specific challenges! If you have an invisible illness, you've probably already experienced this. Because what we fight daily cannot be seen... and therefore is not often understood NOR remembered.
We have to advocate for ourselves in the gym and build in extra rest and recovery from the start. We also have to take into account the amount of stress already place on the body. This is a super important nugget right here.
The amount of stress our body is under is the TOTAL sum of stress in our lives. (P. 159 The Paleo Approach.) Which means we need to add the amount of stress placed on the body from working out PLUS the amount of stress place on the body from chronic illness PLUS the amount of stress place on the body from daily life PLUS any stress placed on the body from life transitions or difficult seasons.
That can be a lot of stress, right?!
Since stress can lead to inflammation in the body, and inflammation is related to chronic illness, we must be careful - more careful than the "average joe" - to NOT add so much additional stress that we take ourselves out of short-term stress (which by itself can improve the immune system) and into chronic stress (which has a significant effect on the immune system and chronic illness).
One way to do this is to actively schedule in rest and relaxation. To move every day, but for shorter periods of time. To add meditation to our workouts. To spend time in nature while we move. To make sure we get a full night's sleep.... Etc.
(5) EXPLORE ALL KINDS OF MOVEMENT.
Running on a treadmill is not the only way to get a good workout. (In fact, it might not be the best way at all. I break down some of my favorite ways to exercise for autoimmune disease and chronic illness in this post here.)
Crossfit isn't the only way.
HIIT workouts aren't the only good workouts.
Even Yoga isn't the only "restorative exercise" we can do.
When navigating how to safely exercise with autoimmune disease or chronic illness, open yourself up to new possibilities. After all, exercise is just movement. It's physical activity. It's giving your body the chance to move through full ranges of motion so that it can better handle day-to-day tasks. (And maybe play a little more than usual.) That's it.
If you like dancing, have you tried the NIA Technique?
If running puts too much pressure on your joints, have you tried swimming?
If you like strength training, have you tried Animal Flow?
If nature is your happy place, have you tried a guided walk?
If it hurts to stand, have you tried chair Yoga or chair dancing?
KEEP EXPLORING UNTIL YOU FIND SOMETHING YOU LOVE.
Find the movements and physical activities that will put your body into the relaxation response. (A term first introduced by Dr. Herbert Benson to essentially describe the opposite of the stress response.)
Find workouts that feel gentle and kind to your body... and totally light you up. Try activities that both stretch your tight muscles and strengthen your weak muscles, so that you can move more easily throughout the day. Focus on exercise that strengthen your "powerhouse muscles" (the group of muscles at the center of the body that keep us stable and secure), so that you can reduce pain and inflammation in other areas like the back or hips.
Because THIS exploration is how you safely exercise with chronic illness and autoimmune disease. You let your body, and your JOY, lead the way.
I know specifics can be helpful, and at least feed our curious minds, so here's the exercise plan that I currently follow.
At least twice a week, I practice restorative exercise -- whether a workout inside the Boulevard or a local Yoga class. Once a week, I work out at a local gym and strictly strength train. Once or twice a week, I go to that same local gym for a class that mixes light strength training and cross conditioning. Five to six days a week, I go on a guided walk with my pup to break up the day. (I sit a lot for work.) No matter what, at the end of each formal workout, I always play. (Things like handstand walks, toes to bars, etc.) Because that "play" is why I move. It's why I'm so inspired to find a workout program that works for me. One that allows me to exercise with an autoimmune disease but without pain.
Because movement IS meant to be fun! EVEN IF you can only do a little bit at a time or it doesn't look anything like it used to.
I'd love to hear from you: What are your favorite ways to move??