This is Why Exercise Can’t Cure Illness

This is Why Exercise Can’t Cure Illness

One of the most annoying misconceptions about many chronic illnesses is that you can transcend the symptoms by exercising or doing physical therapy. This untruth is especially bothersome for people with Lyme disease, fibromyalgia, myalgic encephalomyelitis (MECFS), and other illnesses that aren’t acquired through inactivity or poor lifestyle choices. Take Lyme disease, some of the most healthy, active people get the illness. These people are hikers and fitness nuts who become severely ill and can no longer do the workouts and activities they love. The same goes for people with MECFS. But for some reason, perhaps because people fail to see the stark contrast of these patients’ lives before and after they get sick, there is a persistent belief in society and the medical establishment that if only they started to exercise again they would heal themselves and get back to their old way of life.

People with Lyme and MECFS frequently get grouped in with people who have certain acquired conditions for which exercise can be an effective treatment. But for those of us with severe Lyme and MECFS, treating our illnesses with exercise is like putting middle schoolers in college classes and expecting them to do well, not drop out and be filled with resentment for the rest of their lives.

This is how I feel when someone insists that exercise is a viable treatment for my condition and I should do physical therapy even though there is an illness still wrecking my body. The problem is: the illness isn’t done doing damage and exercise will only cause more harm. Nobody heals a broken leg by running a marathon. For those of us with invisible illnesses, healing through exercise is pretty much impossible, and probably harmful, especially when our energy is needed to heal, not cause more stress. That is, after all, what exercise is — stress. By going for a run or doing push-ups, or even just stretching, you are putting your body under stress. For some people this stress is a good thing–the muscles break down, heal, and become stronger. But there’s no doubt that your body is doing strenuous work, of which a sick body either cannot do or cannot recover from. A sick body can’t handle the stress of exercise. It’s that simple. And if anyone knows this it’s me.

Before I got sick in 2010, I was a fitness instructor and competitive bodybuilder.

I used to throw weights around the gym like pillows and flip giant tractor tires in my backyard.

But then I got sick and had to learn, stubbornly of course, that exercise was not going to make me better and was probably going to make me sicker the more I did it.

Still, I fought this realization every chance I got. Even when I knew riding my bike was going to leave me curled up in a fetal position on the bathroom floor, I still went out for a ride. I still pushed the metal frame out to the street, swung one leg over the seat, hiked up my pant leg, and pedaled out into the world as briskly as my ailing muscles allowed. I felt the cool sea breeze whipping around my face, I smelled the foliage and saw the bright sun shining across the suburban landscape. But quickly it became clear that my muscles were pretending to be fine, they were trying to do what I wanted, and maybe they could for a few minutes, but then the facade faded and I returned home to find my own personal Hell waiting for me on the bathroom floor.

Every time I went through this vicious cycle of brief satisfaction followed by lengthy misery, I told myself I would never do it again. But I also told myself that it was absolutely worth it. And that’s probably why, despite my earlier and better judgement, I kept doing it.

Eventually my body put my mind in submission. It quite literally stopped going along for the ride. It was done pretending that it could keep up with my active lifestyle. My body just couldn’t work out anymore. I tried to do light forms of exercise, like foam rolling or stretching, but my inexplicably inflamed muscles gave out before I could even start the workout. And now that I’ve been bedridden for three years, even thinking about stretching is dangerous because the margin for overexertion is so fragile I inevitably overdo it and hurt myself.

The other day, for instance, I realized “Hey, I haven’t flexed my arm muscles in a long time.” So I did. I flexed my biceps and boy did I regret it. I slowly twisted my wrist inward and felt the mushy muscle pop, as if to say “Hey, remember me? Why don’t you use me as much as you used to?”

My entire arm seized up and I experienced pain of which I had not felt in a long, long time. The initial pain was probably a strained muscle. This happens all the time to deconditioned bodies, but what separates a sick person’s injury from that of a healthy person, is the debilitation and prolonged recovery. I literally couldn’t use my right arm for an entire day, it was profoundly weak, in excruciating pain, and immobile. The injury had a ripple effect through my entire body. I became nauseous and weak; my whole body throbbed with inflammation. Why? Because I flexed my arm for a few seconds. Unbelievable.

And then there are my past attempts at rehabbing. Last summer I was able to get myself out of bed for the first time in two years. I was even able to stand on my own. Then my health took another dive and any aspirations of continuing to rehab were put on hold. I haven’t gotten out of bed since.

Now imagine being someone who used to lift more than 400 pounds and having to cope with such profound weakness and an inability to rehab. Imagine being anyone with such an illness and having someone tell you that the same thing that just hurt you, the thing that makes you sicker, will make you better.

I can’t even count how many times someone has gently suggested that I try some sort of exercise to improve my health. And every time I resist the urge to go on a sardonic rant. I’ve had people tell me to exercise because my muscles will atrophy (which is true, but when you’re sick there’s not much to do about it). I’ve had people offer to make me workout plans to “get back in shape,” to which I wish I had said, “No thanks, I used to be a trainer, if I was able to exercise I would make my own damn workout plan.”

But the most annoying suggestions come from doctors and other medical professionals. Because they have impressive credentials their suggestions automatically carry more weight, but they can be just as ignorant as laypeople. I don’t think I’ve seen a doctor while I’ve been bedridden who hasn’t suggested I exercise in some form. When I was at my sickest point, barely able to move in bed, a doctor examined me and prescribed a few physical therapy sessions. I didn’t make it five minutes into the first session before I had to stop and nurse an injury. It’s amazing how even the most helpful, knowledgeable medical professionals still can’t resist the urge to suggest physical therapy or graded exercise therapy.

Perhaps these doctors have good reasons, at least in their minds, to believe that exercise is a viable treatment option for illnesses that leave the body so debilitated the patient can’t even sit up in bed. After all, I imagine some version of this is what many medical schools teach, although I’ve never studied their curricula. And then there’s the societal notion that exercise is never harmful and is always a good thing, if not the answer to many health problems. Just take a look at the countless number of studies done about the benefits of exercise on chronic diseases, as if these conditions are dough just waiting to be shaped by the same cookie cutter over and over and over again. I’m sure someone has done a study about the adverse effects of exercise on chronic illnesses, or at least I hope they have. Though, I’ve looked and can’t find any such study. Perhaps it’s been buried by the bevy of redundant studies insisting that the opposite is true.

Personally, if I was a researcher, I would want to think outside the box. Why would anyone want to do a variation of a study that has been done so many times before? Especially when it leads to misconceptions about some very sick people. Just look at the damage that continues to be done by the PACE Trial despite it having been debunked.

Still, I truly believe that most people who think exercise is universally beneficial tend to have one thing in common: good intentions. They care about and want to help sick people, otherwise they wouldn’t even bother making a suggestion. Their hearts are in the right place, but their heads aren’t. Unfortunately, the only way they know how to help is by offering unsolicited advice about something they know little, if anything, about. Even though I wish these people wouldn’t offer their flawed input, I try to remind myself that despite their ignorance, their motives are good. They aren’t telling me to exercise because they think it’ll hurt me, even though, in actuality, it certainly will.

I also try to remind myself that I used to be ignorant about the same thing. I used to be the gym rat, the sweaty guy flexing in the wall-length mirrors. I used to write articles about the best way to exercise on a diet and how more people should do Olympic-style weightlifting. I can’t say what my reaction would have been back then had I come across someone as sick as me now. I like to think that I wouldn’t have known what to do, but I would have been smart enough to acknowledge the gravity of the situation — how sick the person was and that their ailments far exceeded my scope as a fitness expert. But, like so many people who ask ignorant questions and offer unsolicited opinions these days, I very well could have told them the same thing: Just go exercise.

Luckily, my outlook changed. I was about a year into the illness and I was writing an article about working out at the beach. I realized, “Fuck, I can’t do these exercises. What am I doing? Why the hell am I trying to do squats with a piece of fucking driftwood on my back when I can’t even go grocery shopping?”

The realization made me very sad, it still does. I had my favorite thing, the thing I loved to do most in this world, taken away from me. But that’s life. It’s not fair, far from it, but I’ve learned to adapt to the unfairness of my circumstances. That is, after all, the only thing we can do to move forward.

A few things before you go:

1. Thank you for reading!

2. SATURDAY, MAY 12th is International ME/CFS Awareness Day. There are protests and advocacy events planned in more than 100 cities around the world. Please join in. You can find the event nearest you or simply take part in advocacy on social media using #MillionsMissing.

3. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would be very grateful!

4. If you would like to donate to support this blog I would be equally grateful!

Farewell to a Passion 

Farewell to a Passion 

I’m not sure how many people know this, but I originally started this site as a fitness blog. I began writing posts in August 2011, many of which were geared toward people trying to improve their fitness. Check out the archives from 2011 to 2013 and you’ll find a very different tone and theme to this blog. 

Actually, on second thought, don’t check out the archives — the first several posts on this blog are awful. They are corny, poorly written, unedited attempts at inspiring people to live healthy and exercise. 

I wrote them less than a year after I got sick in November 2010 and I was obviously still very attached to my fitness instructor persona. So much so I even wrote a self-help book of sorts trying to inspire people to be healthy. But like my early posts, and despite lots of time spent writing, The Optimal Balance Plan was pretty hokie and unedited. 

I remember when one of my friends bought the book on Amazon without telling me and then read it. She later told me it took every bit of restraint she had to not take a red pen to the text. And now that my writing and editing skills have improved I certainly don’t blame her. I’m actually scared to go back and read the book because I too will probably want to take a red pen to it. 

But at the time the point was not so much to write well, I suppose, but rather to motivate people to live healthier. And now that I’ve been sick for so long the irony is not lost on me. 

After I became certified as a personal trainer in 2009, my goal was to help people with their fitness. That is, for the most part, why I have continued to renew my certification every two years since. That and if I let my certification lapse I would likely have to retake the test again in order to train clients, which would involve physically going to a testing center and, oh yeah, studying. I emphasize the studying because I initially had to take the test three times before I passed, mostly because I hate studying. 

The truth is I have forgotten much of the knowledge that a fitness professional must utilize while training clients. I’ve forgotten a lot of the anatomy and physiology, the business aspects, and even many of the workout wisdom I used to spout-off to my clients.


So I have decided not to renew the certification. It makes me sad to know this part of me is nearly dead, and has been slowly dying for a long time now. I have been a sick person with an inactive certification longer than I have been a healthy fitness instructor training clients. 

I wasn’t even able to use the certification for a full two years before my career as a fitness instructor took a backseat to my illness. Yet I still renewed it, three times to be exact. The first time I was certain I would put it to use again. The second time I had my doubts, but was actually able to use it to train a couple clients online. And the third time, well, that’s a story to be told…

The last time I renewed my certification was in 2015. And by “I renewed my certification,” I actually mean my mom renewed it for me. I was completely incapacitated at the time, but through grunts and hand signals I was able to tell my mom how much keeping the certification meant to me. So, after she got off of work one day, my mom sat down with her laptop in my dark room. She proceeded to take the online tests necessary to renew the certification. She was a science teacher for a long time so she had most of the questions nailed, but when she was in doubt she looked over at me as I lay completely horizontal with blankets shielding my face from the laptop’s harsh light. Then she read the choices and I gave her a thumbs up when she called out the correct answer. 

She got almost all of the answers correct. But now looking back it feels silly to have gone to such lengths to hold on to a part of me that was all but dead. I mean the irony of a severely ill man, unable to speak or eat solid food, renewing a fitness certification when he couldn’t even lift a pen is kind of comical, but also cringeworthy. 

At the same time I know that stubbornness and sentimentality often go together. I held on to the certification when I became bedridden because it meant so much to me. And at the time I had so little to hold on to. It gave me purpose and a sense of accomplishment. If I had died back in 2015 then I would have found comfort dying with a valid certification — a way of showing that I did something with my life. 

Why don’t I need that comfort anymore? Well, I still need it, maybe we all do, but I’ve now found it through other sources. I’ve been published in the LA Times and a bunch of other major publications, I’ve told my story and advocated for the research of a disease few people outside the patient community know about. And that is enough for me; I don’t need a fitness certification to feel accomplished. 

The only hard part about letting go of the certification is its symbolism and my fear that I will never again be involved in the fitness industry. It is a legitimate fear of mine because I love fitness so much. It is a part of who I am and the person I strive to be.

But I must let the certification go. It is once again set to expire on July 31, and I have decided to let it lapse. Writing these words is hard for me, but there is no logical reason to renew the certification. It costs $500, which would be better spent on my ballooning medical expenses. And although I have gone back and forth about it (and may still change my mind) I think I am ready to move on and focus on a career that lies within my current abilities. 

Thanks for reading! I know many people with chronic illnesses have had to alter their careers or forgo them all together, so please feel free to leave a comment and share your experiences. 

Standing 

Standing 

Today, May 12th, is International M.E. Awareness day. There’s nothing I can say about this horrible disease that I haven’t said already on this blog. But I can share another part of my journey and battle with the disease with you. 

It’s bewildering to think I used to get up every day and lift hundreds of pounds, thousands if you count the cumulative amount of weight I lifted each workout. 

Every morning I ate some weird hippie cereal, drank some weird hippie drink, then got on my not-so-hippie bike and rode to the gym. There, if it was leg day, I would do some foam rolling, dynamic stretching, and then get to lifting. Deadlifts were my favorite exercise, probably because it was the exercise of which I could lift the most weight. My max was 425 pounds more than twice my body weight at the time. 

It was thrilling to lift that much weight, but also painful. The symbiotic mixture of pleasure and pain reminded me of the feeling of having a tattoo needled on my skin. It was a wonderful pain, the kind of pain that made you forget about what you thought was pleasure; pain was the best pleasure. 

When you can’t tell the difference between your own pleasure and your pain then you’re an addict.

Margaret Atwood

The enjoyment I got from the pain of lifting heavy weight may have actually been at the core of my addiction. I was addicted to exercise and I couldn’t stop doing what some people never do in their entire life — lift heavy weight. 

I was a competitive bodybuilder, but even that — the thrill and vanity of sculpting my body, then posing on stage in front of hundreds of people — was not my addiction. Rather, I was addicted to the process of striving for something I could never obtain — perfection. I always used to say, “Working out is the most important thing to me,” which was true. Sure, there were people more important to me, but people aren’t things and working out was the single thing I cared most about. 

Exercise still has a special place in my heart; it will always be a big part of me, regardless of my physical condition. The fact that I still feel that way after such a long absence is a reflection of how much fitness has done for me. 

I remember a conversation I had with my friend, Keith, who mentored me in bodybuilding while I was in college. One day he explained how my workout routine — a meticulous four-hour daily gauntlet of grueling lifts — may have actually been counterproductive to building the ideal bodybuilding physique, one made of lots of muscle and minimal fat. I thought about what he said — something I had considered myself prior to the conversation — and knew he was right. Excessive exercise is actually counterproductive to the ideal bodybuilding physique because you end up burning muscle, or at the very least not optimizing muscle gains. But I didn’t care. And that’s when I knew I was addicted. Like an alcoholic not caring if his drinking adversely impacted his career or family or anything else, I didn’t care that my dependence on exercise to cope with the stress and monotony of life, or the trauma from the fatal car accident I was in, took away from my family time or schooling or work or even my bodybuilding and modeling aspirations — the main reason I worked out so much. It was quite the anomaly. 

Even as I got sick and my health began to deteriorate, I refused to give up exercise. I remember going to the gym in a haze of sickness — weak and disoriented — trying to lift heavy weights and failing miserably. It was like someone just zapped away my strength. Poof. I literally lost half my lifting ability overnight. In my feeble attempts at lifting in the weeks following the initial onset of my illness, I could barely deadlift half my max. Soon I lost my ability to lift any weight at all. 

During a brief improvement in my health a couple years later, I tried to lift again. But I was dismayed to find I could barely lift a 25 pound kettlebell. The many months of resting had depleted the thing I had tried so hard to conserve — my strength. 

Shedding a bit of my stubbornness, I tried yoga and other forms of exercise that were not as harsh on my body. But I still rode my not-so-hippie bike on good days and a couple times I even tried to train a few clients through video chat. 

Those virtual training sessions were the hardest on my body, but also my psyche. I felt out of place, like a phony, telling someone to exercise and eat healthy when doing so had made me sick, or at the very least had a null effect on my ailing health. I couldn’t train myself, why the hell was I trying to train someone else? 

Because I loved it! If I couldn’t treat myself to the beautiful pleasure/pain I could bestow the feeling upon someone else. But alas I couldn’t even do that. Not for long, anyway. 

After my second virtual training session and consequential inability to care for myself, I realized I had to stop. No matter how much I loved it, and how blissful it was to exercise for a few minutes, spending days in bed and having people bring me food because I couldn’t take care of myself felt selfish. 

Now, seven years after my last heavy lift, the only reason I have kicked my addiction to exercise is because I physically can’t do it. These days I can barely lift simple items like my phone or a magazine. But as depressing as the comparison is, I find it sort of motivating — a challenge to conquer, however insurmountable. 

I may be physically weak but I’m getting stronger and as much as I miss lifting heavy weight, there is something inspiring about starting from scratch and working my way back up. 

So now here I am, shuffling my body to the edge of my bed, dangling my feet to the ground, and shakily planting them there. 

Then there’s this walker — an instrument of my rehabilitation — of which I grip the bars in an almost identical way as I used to grip the bar before doing deadlifts. I may have even done the same “pre-game” ritual of shaking my shoulders to ready them for the weight they were about to lift. The real difference was, however, that as I lifted my upper body to a standing position there was no weight attached to me, no 400 pounds of artificiality, just 165 pounds of meat and bones. And I must say, it was the most satisfying lift of my life. 

I wasn’t expecting to use a walker for fifty years, sure, but hey, it’s good practice. I suppose. But I must also say, this lifting of my body to the standing position was painful. And not the enjoyable pain I described earlier. This pain was evil, unadulterated pain. It was the my-body-doesn’t-just-hate-me-my-body-is-going-to-kill-me pain. I hadn’t put any weight, let alone 165 pounds (or however much I weigh) on my hip, knee or ankle joints in more than two years. So naturally those joints were pretty unhappy, even as I popped Advil in my mouth like jelly beans. 

The irony of once being addicted to exercise and now finding myself rehabilitating my body is not lost on me. I hope nobody takes offense to me saying so, but I am very much an addict in rehab. And while it is by no means a conventional addiction or rehab, I am here nonetheless — hoping to recover. 

Thanks for reading and subscribing to my blog. Please take a few seconds to mention M.E. Awareness day on social media or to someone you talk to in person. It would mean a lot to all of us fighting this awful disease. 

And for those of you with the disease or close ties to it, please check out the tele-support group I just learned about. I haven’t been well enough to participate but I hear it great and hosted by the Solve ME/CFS Initiative, here’s the info:

It takes place every Saturday at 8pm EST. 

Dial-In Number: (712) 770-4700

Enter your Access Code: 915110 followed by # sign.