It’s Not Recovery, It’s Remission or Positive Management

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.

Advertisements

11 thoughts on “It’s Not Recovery, It’s Remission or Positive Management

  1. Oh, Marvin, you know I admire your work, but please don’t throw the baby out with with the proverbial bath water. Disagree with the extremist antipsychiatry folks, fine. But don’t take away the hope that mainstream recovery concepts provide. I remember working at Terrell State Hospital in 1970. It was an institution of thousands of people who were told this is as good as they will get. The malaise of hopelessness was so thick you could cut it with a knife. A couple of years later, I lived and worked as a resident counselor in a halfway for ex–Terrell patients house who were being “deinstitutionalized.” These schizophrenic persons were finally being told there was hope. Not hope they would be CEOs or rocket scientists. Hope that they could hold a job for 20-40 hours a week. Hope they could have relationships. Hope they could go for a walk, or play volleyball or watch TV. Hope.
    So disagree with the hate mongers, but keep a reverence for the human spirit that strives to improve oneself and improve the world. Recovery, when used appropriately, does empower and inspires realistic hope.

    Like

    1. Thank you for your comment and support. I don’t disagree with you at all and I realize that I am walking a thin line on recovery. There are so many who talk about recovery who mean the complete absence of symptoms and a restoration to normality which is usually not possible. I consider that to be a position that denies the seriousness of the disease and trivializes it.

      At the other extreme are those (and I hope their numbers are in decline) who give a diagnosis of schizophrenia and do take away all hope which I’ve seen. That is just as wrong. There has to be a middle ground based in reality.

      Erin Hawkes who wrote When Quietness Came was involuntarily hospitalized over a dozen times and nothing helped until finally one drug did. She was not able to complete her PhD in neuroscience because of the deficits but worked in a lab. Turned out she could not do that either so is now a peer specialist working on an outpatient team helping others and giving lectures on schizophrenia to health care workers.

      Dr Carolyn Dobbins (What A Life Can Be) managed to acquire a Phd from Vanderbilt and defended her thesis after being released from an involuntary hold. The Scottish Recovery Network has the best definition.

      Always appreciate your support and criticism

      Liked by 1 person

    2. The hope for the future will come with better understanding of biological underpinning of these diseases. This will bring better treatments. I have realistic hope that we are moving toward that. The trouble with the peddling of recovery as though it quells all symptoms is that some go off meds and some get short shrift with necessary services. And some get discouraged when they relapse. Often services are cut off from services as well as discontinuance of disability pensions etc. The government is happy to cut people off if it can pretend the illness has gone away.

      Like

    3. Marvin is telling it as it is, in plain English,he is not negating hope, only suggesting that the recovery movement use moderation in their comments.

      Like

  2. HI Ive just found your blogs. I work in this field as a teacher of a knowledge that can help people make sense of everything including mental illness. I find your ideas very interesting – I don’t know enough to agree or not but I 100% support your attitude and stance about mental health. The way it is seen by so called professionals is laughable if it werent so terrible,

    Like

  3. Mr Ross is conveniently ignoring the longitudinal research that shows that in fact about 15% of people in this country, and up to 20% of people in developing countries do in fact completely recover. Almost 60% more recover to the point of living satisfying lives though the time to do so varies – sometimes up to 30 years. People supported in the community regain satisfying lives much quicker. People accepted into the community connect and find roles and contribute to the community. After the initial onset people do not get worse. This isn’t an illness – it is a brain impairment for most and with the correct supports most people can have a good life. However Mr Ross and many organizations in the medical community would stand to loose a lot of the money they make off of people (many in poverty I might add) if they admitted the power they hold and the role they have in constructing disability and illness. By the way, it isn’t about “anti-psychiatry” is is pro-human rights, the right to all the information to make individual decisions and not to be objectified and lumped into a single group with low expectations. Unlike Mr. Ross you want to be well informed of all the research and experiences of people! Read more than the material that fits your ideology. Listen to others, include the voices and experience of people who have psychiatric disabilities. It’s time to rewrite this story.

    Like

  4. THANK YOU! I cannot agree with you more. I enjoy reading your articles and opinions on mental illness. I feel I am constantly informing those around me that there is no potential for recovery in my future. I only aspire to a comfortable management level.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s