Recovery is a Journeyby John McManamy Patient Expert
You are emerging from a crisis or emergency situation. Your clinician has informed you that you have bipolar disorder. The medications are kicking in. You are no longer bouncing off walls or chained to your bed. Your worst symptoms have abated. You have your brain back.
But you are not still not feeling yourself. Something isn't right. And the side effects of the medications are making you feel worse in many ways. Is this it? you wonder. Is this my fate as someone with a severe mental illness? Is this what each day of the rest of my life will be like as an individual with bipolar disorder?
Clinicians cite high success rates for treating bipolar disorder, as high as 80 percent. Findings from the Stanley Bipolar Network, based on surveys of outpatients at participating clinics, however, paint a far different picture: Only a third of the patients in that particular study were currently married. Another third were single, and the rest were separated, divorced, or widowed. Despite the fact that approximately 90 percent had high school diplomas and a third had completed college, almost 65 percent were unemployed and 40 percent were on welfare or disability.
Admittedly, the individuals surveyed represented a population of struggling patients, but other studies corroborate these findings.
What is going on? Why the apparent disconnect between so-called treatment success rates and reality? Time for a word lesson:
Response is a term commonly used to measure the success (or failure) of a clinical drug trial. Response means a 50 percent or more reduction in symptoms. A clinical trial is deemed to be successful if 50 percent of the people taking the test drug experience a 50 percent reduction in symptoms. But can we truly regard a 50 percent improvement as successful treatment?
Remission signifies the virtual elimination of symptoms. Very few drug trials measure for remission, as only a minority of patients gets well within the short time frame of these studies. The American Psychiatric Association, in its 2002 Bipolar Treatment Guideline, advises psychiatrists that remission is the goal of bipolar treatment. The Guideline also expands the definition of remission to include full functioning. More on functioning in a minute.
Stability tends to be what most psychiatrists shoot for. Think of stability as midway between response and remission. Technically, you are displaying few, if any, of the symptoms that you experienced in an emergency or crisis situation, but you are not well. Stability, nevertheless, signifies an important milestone in the road to recovery. Once you are stable, you are in a position to assume responsibility in setting and implementing goals in your recovery.
Unfortunately, stability is where the therapeutic relationship tends to fall apart. Many clinicians lose interest in your concerns once stability is achieved. Rightly or wrongly, they abdicate authority to you.
Full functioning is where virtually all of us want to be. We feel "well." We are able to have satisfying careers. We are able to have friends and loving relationships. We are able to enjoy our lives. We feel good about ourselves.
In recent years, we have witnessed the emergence of the recovery movement. This movement has been driven by patients demanding better outcomes than mere stability. These days, recovery is an overused word, one that government agencies are talking aboard and about to bureaucratize to death. Other interest groups are trying to hijack the term to discredit psychiatry and medications.
The greatest stakeholders in the recovery movement - the patients themselves - are smart enough not to attempt a definition. Each one of us is unique, with different requirements for what we want out of life.
Having said that, here is my by no means definitive take on recovery, from a project I am working on:
A state where one has either returned to:
A long-lasting period of zero or low symptoms and impairments, together with very high functioning, and/or
The ability to successfully manage one's illness.
Even in a state of recovery, it is highly likely you will have to accept certain limitations in your daily life and perhaps even in what you can expect out of life. What is key is that you have reached full acceptance of your situation, and that you are fully comfortable in your ability to lead what you define as a rewarding and productive life.
So, recovery is possible, even if you are unable to return to the life you had before your illness. If this fits your situation, recovery is more likely to be a journey rather than a destination. We are very rarely the same person once we are well along into the journey. Along the way, many of us experience a profound healing, a coming to terms with ourselves, in closer touch with our own humanity and divinity.
In this sense, even living within certain limitations that our illness may impose upon us, recovery may actually translate into a life better than the one we had before, rather than a mere return to where we once were.
I conclude every talk I give with a passage from my book, "Living Well with Depression and Bipolar Disorder," and it is appropriate to do so here. It comes from a very wise woman I call Jane. I never met Jane. She simply posted this on my website, and it has profoundly influenced me ever since:
"Bipolar is not the problem," she writes. "The problem is the problem. If you suffer with bipolar, you will suffer. If you merely cope, you will merely cope. If you live with bipolar, you will live."