Do You Really Want to Know Your Future?

A discussion is going on among my Facebook page's members about whether bipolar disorder is a "progressive" illness. Does it usually worsen over time despite medications, therapies, lifestyle changes, social support and all the other ways we've been told or believe will help? Is it possible to cut the number, frequency and severity of episodes? And if it is, could this eliminate or ameliorate the damage done to our brains' anatomy, neuronal function and cognitive skills?

Virtually all sources agree that UNTREATED bipolar disorder will worsen over time. And once a brain has had a manic or depressive episode, it becomes many times more likely to have another one. Left untreated, this process ("kindling") accelerates: more and more episodes, worse in severity, oftentimes rapid cycling and mixed states.The brain structure and neuronal function change.

But what about TREATED bipolar disorder? The impression most popular sources give is that if intercepted early and controlled with medication, bipolar does not have to be progressive or degenerative. Things will start looking up, they say.

But, as you know if you have this disorder, even started early the treatment is hit and miss. It works sometimes, others not, and there's a seemingly lifelong pursuit of the right medication cocktail. Does that kind of treatment -- the real world kind, what people actually get -- interrupt or stop the natural progression of the disease?

The literature is not clear. Some say the process can be halted; treatment will give us an outcome close to "normal." Personally, I have my doubts. It's an established fact that people with mental illnesses die an average of 25 years earlier than people without one. More is going on than just lack of treatment or lack of supports (or lack of housing, money and jobs). The 25 year life expectancy gap gets more disturbing the more you look into it, because it turns out that it is true even after controlling for suicide, co-occurring disorders and lack of health care (and those other "lacks" I mentioned). Mental illness itself seems to make you die earlier. You are more likely to die of cardiovascular disease or diabetes if you also have bipolar.Why remains a mystery.

People on my page, called Bipolar Over 30, talk a lot about how our bipolar disorder seems to be getting worse as we get older. Treated early and steadily or not, we still tend to have more and more episodes over time, and/or they are more severe and disabling, and/or we have permanent cognitive deficits and collateral problems that make life very difficult. We find ourselves more and more disabled by it even if we had and continue to get the best treatment. BUT NOT ALL OF US DO. There is wide variation among individuals.

What do you think about this? If you are middle aged, has this happened to you? Do you see a lighter or a darker future ahead for you?

I tend to believe the research that says bipolar worsens over time and so does our ability to function day to day, for "anecdotal" reasons: I see it in myself and others I've talked to. I think popular sources that say otherwise are whitewashing things, being "positive" in hopes of motivating people -- perhaps mercifully but not honestly, and perhaps not very helpfully in the long run.

But how should you handle this information if it's true? Does it rob you of hope and motivation to continue? What does it mean for your outlook, expectations, planning, -- and for your family or caretakers? Does it profit anyone to receive this information, earlier or later in their lives? Would you want to know in advance if your bipolar disorder will probably be a degenerative brain disease just like M.S. or Parkinson's, albeit with the same uncertainty about any individual's outcome? 

Personally, I want to know. But, knowing, I will live out the rest of my time on earth as if I didn't.