There Is Basically No Manual.

Living and working with bipolar 

A few months ago, I was diagnosed with bipolar affective disorder, sometimes called manic depressive disorder. The medical textbooks keep telling me that bipolar is over-represented in artists, executives, politicians, and high achieving or very ambitious people. I've been fortunate that some people have reached out privately (seriously, I cannot even begin to describe my thanks), but haven’t found a huge number of stories of people I relate to describing how they manage living with this illness. When I started writing this piece, I wanted to outline the strategies that I've been using to manage that diagnosis, partly in case someone else was looking for the story; but I also wanted to start a conversation about bipolar and the people living with it.

I keep wondering how many people there don't have the safety to come out on the internet as bipolar, who don't have the privilege and the opportunity to talk openly about who they are, and how that plays into increased isolation and stigmatization of people in this community. Frankly, I already have a history of severe trauma and cPTSD, and PTSD, but bipolar feels like a whole different class of challenge; it feels more disruptive to my life. I imagine I’m not the only one that feels that way. 

So here goes: this is what it’s been like.

This is hard. And it’s forever. 

There's a layer I’m still learning, about how to have an identity as a bipolar person, someone with bipolar. 

There are so many ways that this will increase the complexity of my life, in ways I both understand and those I don’t. The changes and personal shifts will impact basically every area of my life and every choice I make from here on out. It's a lot of things.

I'm still coming to terms with what that means regarding what possibilities are available to me now, and how those are different from what I imagined for myself even 6 months ago. I still believe I can do the things I want to do, but the difficulty of doing them will change, and I’m bucking myself up for that. 

The day to day has already changed: I have to remember to take my medications every day, changed my substance habits, keep up with psychiatry appointments, schedule time with my therapist, and now have to find time for blood tests. There's the daily tracking of my mood; I'm living with the inevitability (and anxiety) that I will have a mood disruption again at some point (because that's how this illness works). I have to be constantly vigilant to make sure that I don't have a severe episode. 

There is just so much process work. I’m working through the stages of grief, in just as haphazard a way as you’d imagine. 

I don't know that I'll ever feel entirely in control of this disease. 

Maybe I'll get better with practice, but it seems to be more about management and learning how to live with the cycles that are happening than controlling everything. It's such an inherently uncertain thing that I'm trying to do. The advice the wonderful people around me keep giving is “Just do your best”, and to be honest, I am. I’m healthy and mostly well, and learning how to adapt my life to the space I need for reflection, healing, and routine setting. 

I have to be honest; the ride with these medications has been wild. I'm currently on my second medication, in my third dosage, monitoring and measuring everything with the help of my medical support. The first medication? It made me sleepy, and I gained 15 pounds in 6 weeks. The second, on a too high dosage? There was a two-week period when I took naps throughout the day: I would have 30 minutes between Zoom calls, and I would crawl into bed for 25 minutes to have enough energy to take the next meeting. I had to trade intense Peloton (I know!) sessions for slow walks with my dog.

It's always been essential to me to meet all of the commitments that I have, and it’s taken a lot of experimentation to figure out how to do that healthfully. So much of this is trial and error, and so it’s been my scientific background that’s helped the most. But in truth, this is a whole new level of experimenting and learning for me. In addition to the myriad new routines I’ve had to craft, I've had to fundamentally re-think how I plan my calendar and how I work. I’m more aggressive about moving things out of Zoom meetings and more generous in giving time back. 

Along the way, I’ve also had to clue people into why I’m lower energy than usual or why I just seem “off”. It turns out it’s been an enormous weight lifted: no one has minded, and it’s helped me set reasonable and realistic expectations with people. Rad, right? 

Over the last few months, I’ve learned that so many people living with this disease feel like they have to be silent about it, which is both sad and hopeful to me. 

I hope in sharing some of this; I’m able to do my part to start breaking down these barriers. So much of it is about people being afraid that they're going to be judged or that they're going to lose opportunities, and that's a super-rational concern because we know that people are discriminated against. But we have to also find realistic, hopeful stories because so many people who live with this disease and lead meaningful, fulfilling, healthy lives. And I think hearing those stories has been invaluable to me.