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.