One of the most important coping skills for living with a chronic illness is self-management. When your energy is so limited that you have to ration it for each daily task, self-management provides the tools to do so. It plays an even larger role when your illness has no other treatment available, such as ME/CFS.
Many with a chronic illness will implement self-management strategies themselves, relying on tools such as the spoon theory or the energy envelope. Others turn to guided programs which offer professional support and structure to cope with the burden chronic illness places on their lives.
For the most part, I find self-management a vital component of living with chronic illness. It becomes problematic, however, when self-management is used as a tool to blame the sick for their ill health, and to attribute them far more control over the illness than anyone could ever possess.
When I had a serious crash a few years ago, from which I have not recovered, I was crushed to hear others talk about it as if I was personally responsible. Maybe I tried too hard, or not enough. Perhaps I was too stressed, as if a Smiling Mind app could save my body from the illness that lies within it. At the time, I was actively participating in a professionally guided self-management program, and was devoting all my energies to the goal of recovery.
The fact was, no amount of self-management could have saved me from whatever ME/CFS did to my body that day. And to suggest otherwise is to take the easy way out and blame the victim, rather than accepting the uncomfortable fact that this illness is poorly researched, has no funding, and for the most part, is out of the control of those who suffer from it.
This is one of the reasons why I strongly urge skepticism of those programs which promise complete recovery. Whether it be the Lightning Process or expensive online “CFS Coaches”*, if they take your money and guarantee a cure, the most likely outcome is disappointment. These programs tend to promise the world, but if you don’t respond to their regimen, you could find yourself the subject of blame.
“So if patients get better, they claim the success of the treatment — but if they don’t, they say the patient is responsible.” – John Greensmith, ME Free for All, on the Lightning Process
It is no coincidence that self-management blame rests most heavily on those with illnesses that have no other available treatment. No one would strip a person of their epilepsy medications and tell them to manage their condition on their own, blaming them when they have a fit. So why, then, do we assume that those with invisible and poorly understood illnesses can somehow manage their way back to perfect health?
Management clinics like to promote their “successes”, plastering their websites with clients who went from being bedbound to running 5k. But maybe they should feature other clients – those who veer between remission and poor health. Those who maintain a poor quality of life, but find management essentially to prevent themselves getting any worse. Those who have no real control over their illness, but find self-management makes the difference in ensuring they can get as much from life as possible within the limitations of their illness.
And that is what self-management is about: not “overcoming” an illness, not promoting unrealistic ideas of recovery, and certainly not attributing blame to those who have no say in how their illness affects their lives. I will continue to practice self-management, because I have no choice, and eagerly await the scientific innovation which will make it unnecessary.
*I once foolishly bought a book from one of these so-called “coaches”. In the checkout, they slipped in an $44 DVD purchase which had to be opted out of. Thankfully I noticed before I found myself completely ripped off. His employees are apparently also known for astroturfing in online chronic illness groups.