When you do everything right, and things still seem wrong…

Bipolar’s an interesting diagnosis. It’s sometimes seen as enviably “cool” or “sexy” by people with more run of the mill diagnoses such as depression or anxiety. It’s serious, yet it’s nowhere near as stigmatising a diagnosis to receive as, say, schizophrenia. This is partly because of the many celebrities who seem willing to share their bipolar diagnosis – in fact, there is an entire Wikipedia page of musicians, actors, writer, comedians and TV personalities thought to have the condition. But there’s also the treatability factor; unlike conditions such as schizo-affective disorder or personality disorders, bipolar is regarded as very treatable. There is a pervasive belief that as long as you and your doctor can hit on the right medication at the right dose, in combination with the right self-management plan, bipolar needn’t blight your existence. If you do the right things, you can still lead a happy and productive life.

This sums up exactly how I felt when I was re-diagnosed with bipolar in the spring of last year. OK, so I was young and stupid when I walked away from a bipolar diagnosis and a lithium prescription in my early 20s. A mature adult now, I viewed the re-diagnosis as a positive step. Now we knew what the problem was, my psychiatrist could get on finding me a drug that would alleviate my symptoms. The preceding eight or so years had been a “golden” period of remission filled with career success, relationship stability, and an active circle of friends and hobbies. And I wanted all of that back.

My psychiatrist was encouraging. Treatment, he said, had moved on since I was a student. There were many more options available, and he was optimistic that we would find a drug that would give me complete relief from my distressing symptoms.

That was 16 months ago.

It is certainly true that bipolar remains one of the more treatable mental health conditions. It is also true that there are some fortunate people who quickly find a drug treatment regimen that keeps them stable and symptom free. My concern is that in emphasising the disorder’s treatability, we forget that not every person with bipolar can achieve a symptom-free existence. We also forget that most studies show that when people with bipolar do achieve periods of remission, these are relatively short, especially for people with bipolar I. The Oxford Shorter Textbook of Psychiatry states that fewer than 20% of bipolar patients will achieve, as I once did, a period of 5 or more years of clinical stability. This means there is a danger that when we see someone whose bipolar symptoms seem intractable, we assume that they are simply not “doing it right” – that they must be failing to take their medication as directed, have a doctor who doesn’t know what s/he’s doing, or lack the willpower to follow a self-management plan. 

Two recent conversations exemplify this. The first was with someone who blogged that, “your life after a mental health diagnosis can be whatever you want it to be!” The second involved someone with bipolar II expressing surprise and horror that after 16 months of trying I still don’t feel that the meds are working. While I’m very happy to know that these brave women have managed to move forward with frontline treatments and self-help strategies, it’s just not that simple for me. My life remains very far from what I want it to be, and I disagree that it is within my power to change that. Because I’ve tried. God knows I’ve tried! I follow my drug treatment regimen to the letter. I have completed courses of Cognitive Behavioural Therapy and Mindfulness Based Cognitive Therapy. I go to yoga and meditation classes. I work out. I have a detailed self-management plan. But I am still sick. The second friend’s response to this? “Are you sure you have the right diagnosis?” 

If we buy into the idea that bipolar can easily be addressed with the right treatment, where does that leave those of us who don’t reach the sweet relief of remission, or don’t even feel that the medication takes much of an edge off? It is tempting to say that something must still be wrong: we must be on the wrong drugs, have the diagnosis. It’s a short step from here to self-blame. Is it because I don’t meditate enough, don’t do the right forms of exercise? Am I responsible for my continued sickness, because I don’t eat the right foods, think the right thoughts, have a positive attitude, keep coming out fighting?

What the bipolar community needs to accept is that sometimes you can do everything right, and things can still be wrong. Some of us feel that despite trying our hardest every day, we make little progress. It’s tough watching other people get evangelical about the virtues of their meds. It’s a struggle seeing people go back to work, while we battle with our uncontrolled moods month upon month. It’s even harder if we have to worry that those same people might believe the only difference between us and them is that we are somehow “doing it wrong.”

 

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