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There Is No 'Perfect' Way to Experience a Mood Disorder

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I was diagnosed with bipolar disorder in my late teens. That is close to 20 years ago at this point. It means I’ve had a lot of time to experience navigating the label, the systems that revolve around the label and how people react to the label.

Doctors, nurses, friends, family, teachers and random people on the internet more often will respond to that label rather than the person who has the label. So often this response involves a sort of “teasing out” of further categorization:

Am I “severe” or “mild?”

“Compliant with treatment” or “non-compliant?”

Am I currently “stable” or “unstable?”

Based on these assumptions, it might also be determined if I want to be well or not, and if I my experience actually counts when I have input regarding rights and issues surrounding bipolar and other issues. There are different ways these conclusions are reached, but often the conclusion is used for someone else’s convenience, and not to serve me. The definition of “well” is rarely my own.

These are all ways to whittle down how close you are to being a “perfect patient” — so therefore, how much empathy, grace and humanity you deserve in exchange for your perceived humility, compliance and good behavior. A “perfect patient” doesn’t challenge the simple way bipolar is traditionally thought of: a lifelong devastating illness for anyone with the label, preventing functioning of any kind. A “perfect patient” doesn’t make other people wonder if they have it wrong.

There are many problems with this.

The first one is a lot of people don’t understand how harmful this sort of thinking and treatment is. That’s fair … to a point. We all want a sense of normality in our lives. If someone close to you or people you routinely engage with disrupt that normality, it’s a natural response to try to get the comfortable balance back for yourself in any way possible — and to think that is the best way to have the world. We are the focus of our own lives and inherently see through our own lens. Disrupting that disrupts comfort, and to a certain extent, a sense of safety. Everyone wants to feel safe, so most people will try to keep things comfortable and “normal” — whatever that means for them. 

A second, bigger problem is this:

There is no perfect patient.

There is no perfect way to be in pain.

There is no perfect way to be in pain and there is no perfect way to behave or process that pain. There is no character achievement which makes one person worthy of empathy and support and another not equally worthy of empathy and support. A lot of people tend to punish those who are “ugly” in showing their pain: angry, loud, mean, frustrated or just unpleasant to be around. If that person is also diagnosed with a mood disorder, the assumption is it’s part of the disorder, which is pretty unfair. When my life started turning upside down, I was really upset about it. Genuinely, humanly upset.

We, all of us, need to stop being stingy with humanity — we don’t have the right to grant it to some and not others. The thing some people call bipolar and others call extreme states is painful and scary for the person experiencing it. It is enough to go through that, don’t make some people do it alone and then flock to others’ sides because they are a more “convenient” person to support.

For me, bipolar did the following things:

Broke my bones.

Destroyed someone else’s vehicle thousands of miles from my home, leading to a helicopter search and rescue.

Helped me develop seizures and neurological problems from a completely avoidable head injury.

Hurt me and people I cared about.

Scared me and people I cared about.

Spent thousands of dollars that I don’t really remember spending.

Lost and gained  more than 100 pounds over a couple of years.

Destroyed a refrigerator.

Raged over racism to the point of breaking dishes.

Stopped me from thinking straight and wouldn’t let me read.

Kept me awake for days at a time and put me to sleep for weeks.

Told other people I wasn’t trying hard enough and I didn’t deserve empathy or compassion.

Gave me medical trauma.

People who are “too severe” or who don’t express their pain in a more comfortable way or a way that is easier for others to handle are deprived of empathy. I am deprived of empathy because I am judged to be “not severe” by people who have known me, sort of, the past year via the internet. Ultimately, the concept of severe versus mild may be false given different environments, different supports and different opportunities. With different levels of stress, a person can change drastically. In one environment I could feel like I am drowning and in another I thrive.

What’s my point?

We should not, and ultimately cannot with any amount of certainty, determine a person’s past struggles and experience by their present. Whether over a lifetime or a day, we cannot understand what a person has gone through and cannot compare difficulty or determine “severity” by presentation. To do so is to refuse to hear and see people, to deny them voice and to erroneously judge who is deserving of support and agency by who makes us more or less comfortable. This is a pattern in society, in medical care, in education, in advocacy. It happened repeatedly while I was trying to understand my mood instability and get support and gain control of it. It affects whether people believe my experience “counts” enough to advocate for rights on certain issues, based solely on my presentation, not knowing any of those things I listed above.

If we can just listen to people — whatever state they are in, however uncomfortable it can make us feel — we can support them better.

I might not have ended up on 13 different medications.

I might not have been in a life-altering car wreck.

I might not have been shut down repeatedly while trying to seek medical care because I have the label “bipolar.

Things might be different.

Unsplash image by Allef Vinicius

Originally published: November 25, 2019
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