Exercise Doesn’t Make Me an Ableist – I Lift, Therefore I Limp (And That’s OK)

Exercise—It helps with disease management, pain control, and selfies (if you’re into that kink)

If you are new to my blog, welcome! As long-time readers and supporters will tell you, I often like to open my blogs with a silly joke, often they are dad jokes. For reasons I’m sure a counselor will have to figure out later, simple, silly, dad jokes make me smile bigger than they probably should. Since today’s post is coming from a mixture of anger, frustration, and defensiveness, no joke today. Let’s jump right in.

Today’s post is being brought to you by a quote from a fellow patient advocate regarding exercise. The author’s main thesis was that “we don’t expect people with a cold or the flu to exercise” so why do we make people with an autoimmune condition like rheumatoid arthritis exercise. This author then took it one step further and called anyone, in this case me, an ableist for disagreeing. Quick side bar, if you are not familiar with the term ableist it refers to a system of discrimination or prejudice against people with disabilities. In my ever so humble opinion, this term is overused to the point its now akin to saying “no you shut up”. Anyways, I’m here to state emphatically, the authors main thesis is wrong scientifically, anecdotally, and is potentially dangerous for patients. Movement is medicine!

Before I go any further, please allow me to make something perfectly clear. There are several conditions, which mostly fall under the rare disease silo, that make exercise nearly impossible for the patient and for a select few, even potentially dangerous for them. My post is not about these patients with their rare conditions. For those unfortunate patients who fall into this category, I wish you nothing but the best and I’m here to help however I can.

This post is not about the author who made this thesis. They are not the first advocate I’ve witnessed who has shared such an idea and probably won’t be the last. We need to have a conversation about this thesis so that is why I’m purposely not sharing the authors name or any other identifiable clues about who they might be. Any discussion this post might generate needs to be about the subject matter, and only the subject matter.

Simply put, exercise works. Not only does it make us look better naked which gives us the confidence for selfies (like I said if you are into that kink ), it helps with disease management while at the same time providing some measure of pain relief. Like with any everything else in medicine, there is some risk or potential for side effects, but they are usually easy to manage. Movement is medicine, this is a fact.

My sick resume

Since I’ve shared my story in detail in previous posts, I don’t want to rehash old material. On the off chance you are new to my small slice of the internet and social media, I will give you a quick introduction to my “sick” resume let’s call it.

My main diagnosis’s include rheumatoid arthritis, degenerative disk disease, bilaterial hip dysplasia, facet joint syndrome, chronic pain, severe osteoarthritis, type 2 diabetes, atrial fibrillation (Afib), migraines, and a couple of sleep conditions. Much of my severe osteoarthritis comes from falling off a cliff while rock climbing and something like 6 car accidents (only 1 was my fault I promise). Between the health issues and trauma from the fall and car accidents, my neck fused itself together from C2 to C7. I’ve had over 10 surgeries with more on the way, countless steroid injections, trigger point injections, and multiple radio frequency ablations. Depending on your individual taste in housing, my pharmacy bill could probably buy you a very nice condo or an apartment in a fancy building.

Social media and their definition of “Coolness”

Too often in the world of arthritis advocacy, there is a high school game of those that are deemed not sick enough, so their story is quickly dismissed. I’m not joking, I was had to prove I was sick enough to join a stupid Facebook support group. Coolness is often measured by sickness level in this community. Patients like me are dismissed simply because we utilize exercise in our treatment plan even though I once defined exercise as riding a stationary bike for 3 to 5 minutes without any resistance. Our understanding, experience, and knowledge base doesn’t seem to matter. I’m no expert, but this type of behavior by some sure sounds like the definition of ableism to me.

Even though I disagree with this high school coolness barometer, I must play the game to get my message out. I’m not a fitness influencer, I’m not trying to sell you on some magic powder so you can exercise too, and I take the same medicine as other patients in the rheumatoid arthritis world. Ultimately, I’m just a very tall dude who is tired of being in pain and is willing to put in the work, so I don’t hurt more.

Culture Wars in the Chronic Illness Community

There is a perception in social media, which is reinforced by likes and shares, that if you are not running 23 miles in the mountains in preparation for climbing Mt. Everest that you are not exercising. Or if you don’t have the perfect “fit” as the kids say that makes you look like you belong on the cover of Fitness Magazine that you are not exercising. This is just wrong.

Exercise is anything that gets your blood flowing a little faster than usual. For some, that could mean walking around the block in your neighborhood or going for a 5-mile hike in your local foothills. If you will permit a humble brag on my part, exercise for me is now defined as a 60-minute ride on a stationary bike 4 to 6 times a week. Much like our disease, the definition of exercising is dependent on our particular moment in time. We desperately need social media to understand this.

Being a chronic patient is hard work. It is basically a 2nd full-time job as far as our mental and physical energy requirements are concerned. These conditions are also ridiculous. I have no idea why I sometimes need an Oxy and my cane to take a shower one moment but 4 hours later I can do a 4-mile hike in the Boise Foothills with only minimal pain. Another example would be scheduling a heart stress test, steroid injections, and a diabetes follow up while working 40 hours a week processing tax returns. Adding exercise to this soup of ridiculousness feels more akin to madness rather than a treatment modality.

The Controversial Statement

For all the good social media does in helping us patients battle loneliness, it reinforces the idea of coolness revolving around being sick. So, they don’t want to do the work necessary in the hopes of improving their own quality of life. Their identity and self-become to invested in being the sick patient. They are content with taking their meds, resting, and hoping tomorrow is better than today. Unfortunately, autoimmune conditions are degenerative in nature which means with a lot of hard work, a great doctor, and access to medication the best we can often achieve is remaining at the same disease and pain levels tomorrow as we are currently experiencing today.   

Now, I’ll admit, exercising isn’t for everyone. Some patients just don’t have an interest, nor do they want to partake in exercise. If you are one of those patients, that is fine, and I have no issue with that. All I ask is to just admit to it. Many don’t have the same access and privilege as I have had to develop my exercise knowledge which is an issue I would love to change. That said, this doesn’t mean exercise is bad or wrong for patients, it means our healthcare system is broken. Just admit to that. Don’t go around calling out fellow patients who utilize exercise as part of their disease management and pain control simply because you choose to believe having the flu or a cold is comparable to having rheumatoid arthritis. After all, raising one’s quality of life is our main purpose in life as a chronic patient.

Conclusion - Time to hit the gym

To state the obvious, there is a huge difference between having a cold/flu and rheumatoid arthritis. Logic suggests it doesn’t make sense to exercise with the flu because our chests and heads are filling up with mucus which makes it harder to breathe. It makes sense to exercise with rheumatoid arthritis because a great way to slow the destruction of our joints is to make the muscles around them stronger. Stronger muscles around our joints will slow down and even protect against the destruction being done to the soft tissue by the disease. This in turn reduces the need for steroid injections, radio frequency ablations, the addition of more meds, and surgeries. I haven’t even mentioned that the corresponding weight loss puts less pressure on our joints, strengthens our hearts, and makes us look amazing naked.

With any autoimmune condition, flares are going to be a fact of life. There are certain foods and some activities (ok so I shouldn’t ski the bumps anymore) we can avoid thus reducing the risk of experiencing a flare, but there are no absolutes in flare prevention. We are going to experience flares, all we can do is accept this fact. Exercising is designed to reduce or even eliminate some of these flares. Sure, after not exercising for a period, our bodies are likely going to be cranky and flare frequently at the start, but this will dissipate over time. As I continue to get stronger, my flares are easier to cope through because I have the strength and corresponding endurance to battle the pain. This has the added benefit of also reducing some of the effects of brain fog which is often apart of being in a flare that doesn’t get mentioned enough.

The science, experience, and reason all support the fact that exercise is beneficial for us all. There is no evidence to support the thesis that we shouldn’t exercise just because we are also sick even though we don’t expect flu patients to practice “movement is medicine”. These diseases are ridiculous in nature which means there is no pill, injection, or procedure that will cure us.

We must utilize multiple treatment modalities at once just to achieve a minimal level of a quality of life. If we want to experience more of life’s adventures like falling in love, working full-time, able to attend conferences like Stanford University’s Medicine X (#Medx), or go skiing in the middle of August (could I be foreshadowing a possible upcoming adventure??), we need all the options possible for treatment.

Regardless of your opinion or desire to exercise, do not call me (and fellow patients like me who utilize exercise) ableists! I might not have the articulation and necessary skills to fully express my knowledge regarding exercise, this does not mean I’m discriminating against fellow disabled patients. This post isn’t about picking sides—it’s about expanding options. We deserve a healthcare conversation that makes space for nuance, not gatekeeping. I’m just here to say: movement changed me for a reason, it works.

Patient-Centered Means Individual Choice

I much rather be discussing my individual story and adventures with exercise, new ideas for us autoimmune patients on how we might best utilize artificial intelligence (AI) in our lives, or how stupid hospitals are refusing to treat pain because of anti-patient groups like PROP. However, since this disease is so ridiculous and obnoxious in its execution, I felt the need to respond since exercise is a big part of my success as a patient. Blog posts or tweets that criticize patients like me who advocate for exercise are denying my right to treat the ridiculousness and obnoxiousness on my own terms, especially since the science and our doctors strongly support this treatment option. Afterall, isn’t this right the very definition of patient centered care?

Thanks for coming to Big Al’s Ted talk!

P.S. If you would like to discuss exercise, my experiences with it, or frankly anything else about your disease please, please, please feel free to leave a comment or reach out to me directly. This is especially true for new patients or anyone in a caregiving role. Also, if you are a policy maker, healthcare executive, or an elected official wanting to learn more about the patient perspective, I would be more than happy to sit down with you and discuss our healthcare system and how we might improve it.