How I Found Hope Despite Being 'Treatment Resistant' for Bipolar Disorder
Editor’s note: Please see a doctor before starting or stopping a medication.
Getting yourself to your mental health appointments can be hard enough as is, but it can be even more difficult when you feel like you’re just the puppet in the room. Aside from feeling self-conscious about your behaviors, embarrassed for your thought processes or feeling like a seemingly sad sack of pajamas and tears because of your weight, there’s more.
• What is Bipolar disorder?
After trying over 50 different medications within a three to four-year period, after being described as “treatment resistant” and after medically withdrawing from school twice, I started to lose sight of the hope everybody tried to convince me was there. I not only lost my hope, but my trust in my doctors, too. I received so many different opinions. “Go on this med”, they said. “It’ll stabilize your mood”, they told me. And many of those times, they were wrong.
I even had a test done which was supposed to tell the doctors which kinds of medications my body wouldn’t handle well. It came up with no red flags. I should’ve been grateful my body supposedly wouldn’t react badly to anything, but I wasn’t. I was disappointed. I already knew I reacted poorly to many of them; I didn’t necessarily need the test to tell me that. I just wanted a definitive answer — proof — and now I was back to having none. I felt like I was just destined to be forever sad or manic, with no in-betweens and I wouldn’t find a medication that would work. I know it wasn’t anybody’s fault how my body responded to medications, but it felt like the people who had the solutions just couldn’t find one for me, and after a while that made it hard to want to try anything at all.
It made me angry; angry at my treatment providers that there was no answer yet. But most of all, I was angry at my body for rejecting everything and every chance I gave it. Some ways I dealt with this were:
1. Writing in a journal.
2. Writing or reading poetry.
3. Reading other people’s stories who were having similar issues.
4. Crying.
5. Finding music that said the words I didn’t know I needed.
Eventually, I was put on another medication for bipolar disorder. My hands trembled so badly I couldn’t take notes in class. My hair became thin and brittle and fell out in handfuls. And after a little while, my levels of the medication went into the toxic range. I found this out during an inpatient stay, and after returning home, my outpatient doctor immediately wanted to put me back on it, despite all of my side effects. When I refused, I was met with very obvious frustration and a couple of more attempts to resume the medication. He wasn’t listening to me; again I felt like his puppet and like I wasn’t being believed. This was only one of many times where I felt unheard by a medical professional.
Having trust between you and your doctors’ is vital; treatment depends on that.
Ways I developed trust between myself and my doctor:
1. I wrote down my side effects and things that came up that affected my mood.
2. Admitting if not wanting a certain medication was due to my eating disorder trying to avoid potential weight gain.
3. Showing my commitment to taking them as directed, and calling before making changes.
4. Not abusing the medications she prescribed.
5. My doctor was honest with me about side effects and didn’t just deny them to try convincing me to take it regardless.
6. She also was willing to make changes when I spoke up and said I needed something different.
Sometimes, in my opinion, it is hard for some doctors to understand why people who have a mental illness don’t want to take the medications they’re suggesting. Some just plain can’t see why we stop them, or take them inconsistently. And while we may explain until we can’t explain any longer, it’s just not possible for everyone to understand. And that’s fair. It’s fair enough. It can be hard to understand something you yourself have never experienced. But, it’s also not fair to be expected to take something that impairs your ability to function the way you need to. Shaky hands that can’t write won’t serve me well in school; losing fistfuls of hair every day isn’t “normal.”
Somewhere in this puppet show I starred in, I lost hope and faith along my journey, both in myself and in medications, and in some doctors. However, I did find several physicians afterward who met me halfway and were willing to work with my needs. The first step in cutting the strings was learning how to deal with my own frustrations so I was able to breathe and move forward during the hard times when nothing appeared to work. From there, the next step for me was to build that trust with my doctor. This took time, but the effort in doing so benefitted my treatment in ways I didn’t expect were possible. It is possible to be heard and it is possible to find somebody you can trust to help you get well again. Getting myself to mental health appointments still can be hard, but at least I don’t feel like I’m just the puppet in the room anymore.
It’s so important to be able to have open conversations with your doctors, and for them to really hear your concerns because it’s your body and you’re the one living with those side effects. And the treatment you require may not be compatible with a doctors’ style. And that’s OK; you just need to find someone’s whose does. Advocating for yourself and getting your needs met trumps the potential disappointment of a doctor.
Photo by Sherry Zhu on Unsplash