When Deconditioning Becomes a Distraction

Warning: contains GIFs

You can’t go very long living with a chronic illness without hearing the word “deconditioning” whispered in your ear: by doctors, physios, and society at large. “You MUST exercise,” they say, “or your muscles will waste away to nothing. Don’t you want to get better?” However, as important a role exercise plays in chronic illness management – and I do not deny it has a role to play – I believe that an overemphasis on exercise and deconditioning can be a distraction from seeking real treatment and places the onus of illness squarely on the patient.

When you have a chronic illness that limits activity, it is only natural that muscle tone decreases, sometimes to the point where it places further restrictions on physical movement. In some cases, rehab is absolutely vital – for instance, when a bedbound patient needs to learn to walk again. But in others, rehab or exercise is pushed as a “one size fits all” solution to deconditioning, and by extension, ill health.

What is missing in this discussion is the fact that deconditioning did not cause the inactivity in the first place, and is merely a symptom of illness, like so many others. Even if a patient miraculously managed to return to active exercise and rebuild muscle tone, it would not cure them of their real, biological illness (and in some cases, could cause great harm).

A focus on deconditioning over support and accomodation can shift the responsibility for illness straight back to the patient. It is the equivalent of suggesting that perhaps you haven’t tried hard enough, that maybe you should get off your lazy bum and exercise more. It ignores the complex physical factors that cause an illness in the first place, and that in many cases, make exercise impossible.

The most common response I have received to news of my latest relapse is, “can’t you just do some exercises?”, as if I was an indolent couch potato, rather than someone suffering from a debilitating neurological condition. A better question would be “how can I help you?”

Deconditioning did not make my body go from being able to walk 40 minutes one day to not being able to walk the length of the driveway the next. It does not cause my body to have a major physiological reaction to walking just one step too far, which can last hours, days or weeks. Deconditioning has nothing to do with the fact that when I need to walk just one car park further from the shops, I end up so weak that I collapse to the floor, spasming, shivering and shaking like I have the worst flu of my life.

In short, deconditioning is a symptom of ill health, not the cause. The very same illness which causes my body to scream in outrage should I extend myself one step further, read one more page, or utter just another syllable, prevents me from engaging in the kind of exercise which would keep my muscles in working condition. I am certain there are many able-bodied people who get just as much incidental exercise as I do, if not less, yet they experience none of the fierce physiological symptoms I do when I extend my boundaries.

If I reached the stable state where I could exercise further, I am sure my muscle tone would build again. However, all the exercise and rehab in the world (I’m talking weights, walking, yoga, prone exercises, the lot) did not stop me from relapsing, and they will not prevent it in the future. Investing in my biological health, by searching for a real treatment for this illness, is a far more valuable use of my time and energy.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

11 thoughts on “When Deconditioning Becomes a Distraction”

  1. I very much appreciate your thoughts. I do not have anywhere near the extent of illness that you have, but I have enough to share your feelings. I have three autoimmune diseases, a heart murmur and high blood pressure. I have so much pain in some bones and joints that I have become a couch potato most days. I see my own legs losing muscle and my arms getting thinner (unfortunately my middle isn’t understanding that it ought to be getting smaller, too.) I limp around slowly any time I have to walk anywhere. I seldom GO anywhere anymore because it is too dang painful to get out to the car, into the car, out of the car….you know what I mean. But I have been blaming myself a lot because I KNOW I am supposed to exercise and get out and walk…but I can’t. I have never been much for physical activity, I would rather read, paint, sew….but I took regular exercise class and had a weight lifting regimen several days every single week. I walked the 1/4 mile high school track, which is not far from my house, every night and so on. So, even though I don’t really like exercise, I did it because I knew I had to. Now I can’t. I feel much better after reading your article because you put my thoughts into words and now I realize it is not my fault that I CAN’T walk, run, dance or exercise. Thank you!

    Like

    1. I’m glad I helped you realise you aren’t at fault! It can be really, really hard to shake off that feeling of self-blame and guilt. I hope one day, you can walk, run, dance and exercise again.

      Liked by 1 person

  2. I hate that you’re having a relapse, but I’m so grateful you write about it, and about issues like this. I get a lot of “helpful feedback” from people about exercise. That I’d feel so much better if I exercised more. My doctors do this, too. It’s often repeated to me (and BY me, when I’m trying to be conciliatory) that consistent exercise is the only thing proven to help fibromyalgia. I know, I know, I know. But sometimes it feels like what’s really getting said, is, “If you just exercised more, you wouldn’t feel so awful.” It’s demoralizing.

    Liked by 1 person

    1. Yeh, that sucks. Chronic pain conditions seem to be really closely associated with physical exercise in people’s minds. Bad back? EXERCISE. Fibro? EXERCISE. Obviously it’s not always that simple. Exercise does help me, sometimes, but my body has to be well enough to do the activity first!

      I think it’s possible to acknowledge that exercise can help people, in some cases, but just swanning down to the gym and doing a class isn’t within the realms of possibility for a lot of people, and what able-bodied people class as “exercise” might be completely inappropriate for people with a disability. I’m sure that’s a subtlety that’s lost on most of these “helpful” commenters!

      Liked by 1 person

  3. Always good to read your posts Siobhan, I appreciate the honesty (and gifs) 🙂
    Not to this post but in general, your writing provides an insight into the day-to-day challenges of living with chronic illness, something refreshing in this fast paced world that I think is overlooked when it’s discusesed.

    Tim

    Liked by 1 person

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