By Marvin Ross
Anytime I criticize the recovery concept in mental illness, I get push back. I’m not surprised but the notion that recovery empowers people and gives them hope does not make sense. What I was pointing out in an earlier post was this. If you can’t recover fully or improve significantly, then recovery suggests that you weren’t trying hard enough and you are a failure.
It is only in mental illness among all the chronic illnesses where recovery is talked about. The dictionary definition of recovery is this:
“the act or process of becoming healthy after an illness or injury : the act or process of recovering. : the act or process of returning to a normal state after a period of difficulty. : the return of something that has been lost, stolen, etc.”
People can recover from a bad cold or a broken bone but they cannot recover from a chronic illness regardless of what they do. Recovery is a term or concept that comes from addictions and is misapplied to mental illness. A recovered addict is someone who has stopped using addictive substances. Someone with a mental illness cannot suddenly stop being mentally ill. What they can do with the help of health professionals is to deal with the symptoms as best as can be accomplished and to reach a state of good management of the disease – a form of remission.
If you want to call that recovery, OK but it isn’t a true recovery. Whatever caused the illness in the first place, cells running amok as in cancer, immune systems attacking its own body as in autoimmune diseases, tangles and placque in the brain from Alzheimer’s, remains. Medical management has not progressed to the point where these conditions can be reversed. The best it can do is to help with the symptoms and to provide supports to make the life of the sufferer as good as it can be.
The concept of recovery does not take into account the variability of diseases. Symptoms are not always exactly the same for everyone nor are they of the same intensity. When someone is diagnosed with a chronic illness, they (and the family) get an explanation of it from their doctor. They are told what to expect and what the treatments are. Those treatments will include medications, education, and other relevant strategies.
This is where lived experience comes in. That is another stupid term in my opinion. Because each individual is different, their health care providers ask about their symptoms, severity and how various treatment modalities are working. The doctor knows the disease, the science, the treatments but only the ill individual knows how he or she is coping and what may or may not be working and the potential side effects. That is the lived experience they bring to the appointments and it goes for every malady.
The lived experience as part of the therapeutic alliance between health care providers and their patients has always existed. Lived experience reminds me of a panel I was asked to participate on for a “new innovation” – patient centred care. I did not endear myself to the hospital staff and doctors when I asked what was such a big deal. Central to hospitals and doctors is the patient. Without us, they have nothing so if patient centred care is such a big deal, where did the patient fit in before? It and lived experience are but fads and buzz words.
The proponents of lived experience then usually jump to the need and importance of peer support as part of the therapeutic regimen. That’s fine as long as what it does is to provide a buddy with information, education and coping strategies. Most, if not all, chronic diseases have support organizations. The cancer society, arthritis, lupus, MS, you name it and all do that. But that peer support is not a substitute for the medical specialties.
When anyone is first diagnosed with a chronic condition, they are given some parameters. If you have type I diabetes, the parents (because it is from birth) will be told that it will be necessary for the individual to take insulin for their entire life and to be very careful about diet.
That insulin analogy is often used with schizophrenia. The person is told that they will likely have to take medication for the rest of their lives like an insulin dependent diabetic needs to take insulin. It might not be the best of analogies but it is used and it certainly makes the point. I suspect, but I don’t know for sure, that the much maligned idea that there is a chemical imbalance in the brain with mental illness was nothing more that an analogy to explain that which cannot be explained.
We all ask the cause even though there is never a good explanation. Why do I have inflammatory arthritis? It’s autoimmune but what does that really mean? My rheumatologist would probably shrug and say your immune system suddenly decided to attack your body. Why? No idea. How? No idea but take this and it may help reduce the inflammation (or not).
The patient or family asks why schizophrenia, bipolar, severe depression and the doc, at a loss, says there is a chemical imbalance in the brain. Well, maybe not but the brain is messed up and all that does is to give what sounds like a plausible explanation for the unwanted ailment.
The bottom line in all this is that when you do have a chronic illness, then you manage it as best as it can be managed so that you have as good a life as possible with the deficit. It’s not a cure and it’s not true recovery but it is the best that is available now. So, enough with this recovery talk. It is time to be realistic.