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5 ways to safely workout with autoimmune disease or chronic illness

4/1/2020

12 Comments

 
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I was diagnosed at age 14 with an autoimmune disease. I talk a lot about this diagnosis and what happened afterwards, but I don't talk much about what was going on beforehand. 

The years before I was diagnosed (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 like the 200 fly, 400 IM, and 1650. While I certainly wasn't going to be representing my country at the Olympics anytime soon, I was starting to think about a scholarship to a DI school.

Or, at least, this was the path I thought I was on. 

That path started to blur when I struggled to finish one lap let alone an entire 400 meter Individual Medley. All of sudden, my energy levels plummeted, my hands went blue during practices, and I sat out sets shivering on the bench. My coach (as awesome as he was) thought I was 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 seen and therefore aren't easily understood. Heck, I didn't even know what was going on... other than knowing that all of a sudden I could hardly bring myself to do ANYTHING. 
Getting diagnosed gave formality and answers to my struggles in-the-pool, but internally I didn't feel much better. There was no going back to who I was before I got sick and so life as I knew it was about to change more than I could have even imagined.

Sure, I would still be able to talk about who I used to be in the pool and I could try to explain how an illness flipped everything as I knew it upside down. I could share my previous times and personal bests. But honestly? No one really cares about what you used to do or how fast you once were.

Plus, 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 those. The fatigue that creeps up my left arm when I've used it too much? Only I can feel it and I never know when it'll start.

If you've been diagnosed with an autoimmune disease and want to explore your new relationship to movement...

If you're struggling to be okay with a body that can physically handle a different amount than it could previously...


Here are some things to think about as you learn to safely exercise with 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 autoimmune disease, but it's too important not to share. Many of us have used exercise as way to lose weight, tone up, thin out or sculpt our bodies. But, especially when trying to workout with illness, this 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 or workout in ways that leave us feeling worse than when we started when we move in order to lose weight, control body shape, or even control body function. It makes it a lot harder to listen to ourselves 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 a lot of the diet mentality and body image challenges we face in today's world. 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" (or even achievement). 


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. 

Even if we're working out 80% for our physical health - to feel better and alleviate pain or symptoms - we still need to eradicate that last 20%. 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. 

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 an illness or when you're trying to heal your body, 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, 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 in the first place.

"Is what I do during 30 or 60 minutes at the gym worth at least 24 hours of headaches, fatigue, insomnia, {insert any symptom you experience here}?"

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 bodies and our boundaries. And, as much as we may or may not like it, those boundaries are different for us. Because when those of us trying to manage or heal an autoimmune disease 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 for yourself, here's what helps me.
  • I ask myself how I want to move each day. Restorative yoga? A guided walk? Strength training? 
  • I reign myself in if I feel a slight headache, lightheaded, or simply fatigued one day. (You'll get to know your own signs of an impending flare.)
  • I add in appropriate rest time as a non-negotiable. These rest days allow me to hear what my body has to say.
  • I watch my sleep patterns and take note of my energy levels. 

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 that learning curve should not last. In other words, if you're always feeling tired for hours or days after your workout then it's time to reconsider your exercise plan. 

(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 autoimmune disease in the mix) into negative stress  that works 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.
When we do too much too soon, or too much on a consistent basis without proper recovery in between, we are more likely to experience an excess of soreness, flares that may take days or weeks to subside or other symptoms of overtraining like fatigue, headaches and poor performance.

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 an 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 autoimmune disease or region of 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's massively important to build rest and recovery into your exercise plan. Simply because, at the end of the day, we are not like everyone else in this way.  

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. 

(B
ecause even really great trainers might not understand what is taking place underneath the surface in our own bodies... simply because what we fight daily cannot be seen and therefore is not often understood nor remembered. This is why it's helpful to find a trainer who understands your specific challenges!)

Make sure to advocate for yourself in the gym and build in extra rest and recovery from the start. Take into account the amount of stress already place on your body when determining how much rest you might need.

The amount of stress the 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 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. We can also move every day, but for shorter periods of time. Or, we can add meditation to workouts, spend time in nature while we move or be sure to get a full night's sleep between activity.

(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 with autoimmune disease in this post here.)

Crossfit isn't the only way.
HIIT workouts aren't the only good workouts.
Even yoga isn't the only exercise we can do. 

When navigating how to safely exercise with autoimmune disease, open yourself up to new possibilities. After all, exercise (when it's no longer attached to weight management or weight loss) 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.

There aren't any rules or regulations on how you need to move. You really do get to follow what feels fun to you and trust your body to lead the way.


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?
If power or flow yoga isn't your thing, have you tried restorative yoga?

The moral of the story is this: Keep exploring until you find something you love and something that works for your body in this season.

(Because that's all this is = a season. And seasons come and go... meaning the movement that works for you now does not have to be the only movement you can do forever. Give your body a chance to heal and who knows where you end up down the road!)

Keep exploring until you find the workouts that feel gentle and kind to your body... and maybe even light you up. If you're using movement to combat physical pain in the body, then try activities that stretch your tight muscles and strengthen your weaker ones. Also consider exercises that strengthen the "powerhouse muscles" (the group of muscles at the center of the body that are designed to keep us stable) to possibly reduce pain and inflammation in areas like the back and hips. 

This exploration is really how you safely exercise with autoimmune disease or chronic illness. You let your body, and your JOY, lead the way. Movement is meant to be fun... even if we 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?
​​
12 Comments
Christina
9/30/2018 12:06:10 pm

So much great advice in this article, thank you. I struggle with my favorite exercise - weightlifting. I never know if I'm the kind of tired you're supposed to push through or the kind of tired where I need to cut sets, or stop and reschedule. You've helped me realize that the difference between those two is that one is mental, and safe to push past, and the other is physical, and you have to let go of your plans for the day. I'm getting better at it, but still make mistakes sometimes. I no longer push myself to resume my desired schedule after migraine attacks, or during flare ups of my other diseases. I think I've come around to the idea that 3x a week is just too much for my body. It's not for other people, but it is for me right now, and there's no sense beating myself up about it.

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Kelly link
5/10/2019 12:49:40 pm

Hi Christina! Thank you so much for your comment and the kind words. I am so glad this article resonated with you. (And I apologize for the delay in my response... I truly did not realize there were comments waiting for my approval 🤦‍♀️) I love how beautifully you've explained this difference -- and know you're not alone in making mistakes when trying to find that best "balance". I've had to come to that same realization and decide, even if something is right for others, it might not be for me and that's okay. SO appreciate you sharing this and reminding me I'm not the only one who feels this either!

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Anne-Marie
10/6/2018 06:16:41 am

This is the best article I have read on approaching exercise and fitness with Chronic illness. Has made me look differently at the weight thing. I also have had the steroid, humira and sugery journey and subsequently have put on about 4 stone due to the pain and lack of mobility. I’m 6 months post up from a spinal cord surgery and can’t seem to find the right advice or help on getting back into shape. No one seems qualified to assist and reading ‘motivational and inspiring’ articles by other woman who ‘don’t let chronic illness hold them back’ is so demeaning and condescending as all chronic illness have different severities and impact the body differently. Thank you for you balanced advice that can be applied to all and thank you for the right to not think about my weight while I exercise. To lose the weight I have gained would take punishing exercise which is just impossible in my current health. I’m fed up of being seen as frumpy, as lazy and as an overeater. I want to move. I want to exercise but don’t know how to safely. But if the goal isn’t weight loss as you mention then any movement no matter how small will be good for me. Seems obvious but even walking is difficult and painful. Hopefully I will find the balance one day.

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Kelly link
5/10/2019 01:11:50 pm

Hi Anne-Marie! Thank you so much for your comment and the kind words! I am so glad this article resonated with you... and I apologize for the delay in my response as I truly did not realize there were comments waiting for my approval 🤦‍♀️ Gosh, I could not have said this better myself and I have BEEN THERE time and time again when it comes to those articles. I am SO with you on all. of. this! Restorative Yoga has been helpful for me -- both when it comes to releasing any weight-based motivation and to finding that safe way into exercise again -- and, while I haven't taken the program myself, Get Autoimmune Strong helps those diagnosed with chronic illness exercise even when walking is painful. I so appreciate your comment (I echo much that you share here!) and would love to hear how things are going a few months later.

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Colleen
12/21/2018 06:09:15 pm

Thank you! For reminding me why I want to move again. Why I want to regain my strength. So that I can PLAY! And have fun. And live again. Why not move every day in ways that emulate this.

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Kelly link
5/10/2019 01:00:41 pm

Hi Colleen! Thank you SO much for your comment and the kind words. I am so glad this article resonated with you. (And I apologize for the delay in my response... I truly did not realize there were comments waiting for my approval 🤦‍♀️) I am totally with you on this -- movement can be so much fun!

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Rebecca
2/21/2019 12:47:28 am

Thanks for taking the time to write this article. I have been sick for a number of years now but not sure what with, maybe chronic fatigue but definitely chronic sinusitis and an inability to exercise. I always fall into the same traps of wanting to be like I used to be as motivation was never a problem and I love feeling strong. Lots of awesome tips to follow!!!

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Kelly link
5/10/2019 01:02:22 pm

Hi Rebecca! Thank you for your comment and the kind words! (And I apologize for the delay in my response... I truly did not realize there were comments waiting for my approval 🤦‍♀️) SO glad that these tips are helpful - I can totally relate to falling into that trap!

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Sophie
4/1/2019 05:21:45 pm

Hi,

I am a college student and I was diagnosed with Behcets disease about 8 years ago. I was a multi varsity sport athlete in high school but since college my body is not functioning at the same level. I have had a lot of emotional and physical struggles lately and this article gives me a sense of hope. I feel frail and want to get back in shape but I want to make sure I do not push myself too hard. Thank you for the advice :)

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Kelly link
5/10/2019 01:04:35 pm

Hi Sophie! Thank you for your comment and the kind words. (And I apologize for the delay in my response... I truly did not realize there were comments waiting for my approval 🤦‍♀️) I'm so glad this article resonated with you and brings with it a sense of hope. It might look different nowadays, but it IS possible to find that new relationship with exercise that still feels really good. So appreciate your comment, thank you!

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Elaine
8/12/2019 02:51:32 pm

Thank you for writing such a real and helpful post. I came across this because in my anguish of recovering from 4 years (3 accidents and multiple injuries) I had become deconditioned from not walking for 4 years ...grieved the loss of my beloved stress relief and grieved the loss of my one shot at an athletic competition...then was diagnosed with RA. I'm looking for ways to reframe my understanding of my fitness and strength as I struggle to overcome a depressed sense of 'is it even worth doing 6 pushups because tomorrow I will flare up and be in pain for a few weeks or more' feeling hopeless about doing any movement because I will not achieve my goals. Your article helped me with a start on how I must first work on working out ONLY for health - not for fitness goals like I used to train for sports. It is mentally hard to give that up, but my body is screaming at me that even the smallest of goals may not be achievable. My take away from your article is that hope is not found in the outcome, but hope is in the activity - just moving and playfully enjoying what our bodies can do now, today. Thank you for sharing your experience and wisdom.

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Kelly link
8/14/2019 01:01:46 pm

Hi Elaine! Thank you so much for your comment -- oh how I understand both of those loses. I'm so glad this post was helpful. It definitely is hard to mentally let go of those goals (and past beliefs, honestly, about how we're supposed to move physically, right?)... but as I'm sure you'll soon find, there IS so much hope and eventual joy that comes from listening to the body. Your takeaway is spot on and I couldn't have summed it up better myself. Thank you for sharing!

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