Whenever I’ve written about my experience of recovery, many readers comment that turning their lives around, as I’ve been able to do, is not going to happen for them.
They’ve accepted the fact that their depression will last for the rest of their lives. Even if they’re coping well right now, they understand that depression is going to come back. They’ll be taking medication for as long as they’re around.
Everyone has to make peace in their own way with a chronic illness like major depressive disorder. There are no rules. The course of depression is different for everyone. They differ in reactions to various medications and forms of treatment, the severity and length of each episode and the degree of disability the illness imposes.
If you’ve gone through one major depressive episode after another and neither medication nor therapy have been very effective, it’s only natural to accept what your experience is telling you. I’m stuck with this, so I’d better figure out how to live with it.
That’s exactly what I believed for much of my life. It’s only in the last few years that my expectations about my future with depression have changed. And I have to say that the mental health professionals haven’t been much help as I’ve experienced that change.
As I wrote in the last post, psychiatrists and therapists, except for the few blessed exceptions, don’t “do” well-being. They aim for remission of symptoms and define recovery as getting over a major episode rather than recovering from the illness itself. The diagnosis is never retracted and the patient never declared cured.
There’s an important book on how people with a long history of depression have adapted their lives to the illness. David Karp’s Speaking of Sadness bases its conclusions on intensive interviews with 50 people, as well as the author’s own experience.
He found that almost everyone he interviewed had gone through four major phases in reacting to the illness. These four tally with my experience, and I wonder if they do with yours.
* First comes a period of inchoate feelings when you notice a number of problems long before you have any idea about depression, or even the words to describe it. That’s especially true in childhood through the teen years. Spending more and more time alone, feeling gloomy, sleeping more or less than usual might become common. Migraine headaches might set in. Perhaps it’s weight gain or increasing anxiety in groups or at work. You’re aware of these problems but don’t relate them to each other. It’s just the way things are.
* Next comes a recognition that these are serious problems. You start to think that “something must really be wrong with me.” This can’t be normal, and you look more closely at each sign of trouble. As you grasp how often you feel terrible and can’t function well, you start to think about how to get rid of such a pervasive despairing attitude about yourself and your life. But whatever you try doesn’t work.
* Then a crisis happens. You’re in more pain and chaos than you’ve ever known. Things seem so out of control that you know you need some sort of help. That’s when you get into the world of mental health professionals and receive a diagnosis of a depressive disorder. With a formal diagnosis, you might be relieved to know it’s not just you. If you’re uncomfortable describing the problem as a mental illness, especially to others, you might just focus on the biological side. It’s a disease like any other. In either case, now you know what it is, and you’re getting the treatment that promises relief.
* The fourth stage that Karp identifies is coming to grips with long-term depression. Something changes as you go through recurring episodes and perhaps find that treatment isn’t getting the job done. You start to think of depression as part of who you are. As Karp puts it, you develop a depression identity. Then you need to find a way of living with it indefinitely.
Karp finds that people then tend to go in one of two broad directions as they come to grips with the chronic illness.
* You might resign yourself to a lifetime of depression. The best you can hope for, it seems, is finding the right medication and/or other therapies that reduce the severity of symptoms. If you feel this way, it could mean that you’ve never known full recovery in between the major episodes. Instead a less severe form of depression has stayed with you. You figure you’ll just have to make the best of a life with diminished expectations.
* Or you might feel so good that you believe you’re completely over depression, or that you will soon be able to reach that level of recovery. In that case, it’s likely that your severe episodes have alternated with periods of wellness. Knowing that you’ve recovered fully for a limited time in the past convinces you that the period of wellness can become permanent.
I’ve been in both groups over decades of adapting to depression. I spent a far longer period feeling resigned to a lifetime illness than believing I could put it behind me permanently. Karp makes the interesting point that each new experience of depression creates a feed-back loop, often forcing a change in thinking about what the illness will mean in the future. That’s definitely been my experience.
I’m now in a period of recovery that I believe is permanent, but I have no illusions that I’ll never have to deal with depression again. In fact, I still have residual symptoms and keep working on them to stay healthy. What’s new in my experience, though, is the belief that these leftover problems don’t signal an inevitable return to depression.
To use Karp’s ideas, I’ve changed my identity from one of depression punctuated with periods of well-being to one of well-being with carryover from years of depression. Instead of assuming the worst about individual symptoms that persist, I see them as familiar but isolated problems. I have developed tools to deal with each one but never assume - Oh, here we go again.
Richard O’Connor, in his excellent Undoing Depression, talks about "getting good at depression." What he means is that years of living depressed have instilled the habits of negative thinking and behavior. As we start to feel better we have to replace those habits with ones that support recovery. That’s a good description of what I’m doing now.
I found a refreshing attitude in a recent blog post - though I can’t seem to find it now or recall the name of the writer She said that she’d come to the realization that it no longer mattered to her if depression was a lifelong illness or not. The important thing was how she was living in the present - and had been for some time. Her life felt good, and that’s all she cared about. She was no longer thinking of herself as a depressed person finding an occasional bright spot. She was living in the light right now.
How have you been adapting to life with depression? Does the idea of an illness identity make sense? Has your way of coping with depression changed much over the time you’ve had it?