Greetings! And Welcome! I’d like to share some thoughts, based on observation and personal experience, about the chronic illness experience. I hope you will find some part of this message food for thought.
Why are the disabilities of living with a chronic mental illness so tough to surmount—even a “mild” chronic illness?
For me, the mere persistence is a dead weight. It just doesn’t leave. When I wake up, it’s there, along with all the good stuff. On any given day, it’s heavier or lighter, but there. On a good day, the chronic illness is just a given, perhaps more easily managed than the previous year. On bad days, distorted thinking gains a foothold; all progress appears lost. A sort of monster forms that touches everything I’m taking in, be it music, a glass of fine wine, my daughter’s accomplishments’, or my son’s antics. It smothers memories, the kind of memories that keep all of us going. nd at that point, I bitterly resent its presence.
I’ve found chronic mental illness, in many ways, more difficult than the serious acute episodes of my brain disorder(s). Its horizon obscures other realities. If one’s reality is always disordered, how can a person believe, hope, plan, or take any sort of action to change the present? By definition the future is empty. “Chronicity promotes negative coping skills.” Of course! But the person does not know they are negative. They may not even know they are coping.
I never knew another reality until I experienced an “up-time.” I only comprehended a different way of being when I could compare. Benefiting from a sustained up-time, I began to make observations about past assumptions, challenged myself in small ways to grow, to take risks. Finally, occasionally, two steps forward and one back … rather than two back and one – or none – forward … I began to make observations about past assumptions and challenge myself in small ways to grow. I slowly turned from a land tortoise, with plodding heavy legs, to …. a sea turtle with her wings! Buoyant, agile, and able to explore unlimited horizons. Light, not heavy.
Yes, the bad times reoccur, even recently. But now I know and I believe that the bad isn’t all there is. I can remember an alternative that I have lived. Having that personal memory of up-time is light years beyond others remembering for me. And what of earlier “good times” that everyone assures me where there? When I can’t remember, my husband and children do! I ask them to or they ask if I would find their memory helpful. A positive coping skill!
Another turning point was recognizing that I had learned techniques and was using tools to lessen symptoms. Better yet, the first technique became a template for others. I could fight helplessness.
What prompted the breakthrough? Was it acceptance? A new physician? No! It was effective treatment based on a medication. Not a change in mind set. Not positive thinking. Not unasked-for advice. After 11 years of good old-fashioned compliance to doctor’s orders, many medications, and short-lived partial responses, a medication fit the key “well enough” to start my upward climb. Now I had a foundation. And I experienced a different reality.
People with neurobiological disorders do want to get better. They do their best. The task is to find effective treatment. Almost certainly the key will be medication or another treatment of the organ of the mind. And then the variety of tools: education, true support, therapy with a purpose and measurable outcome, space and time to heal and reflect. All served with beauty and hope.