The Mighty Logo

When a Mental Health Provider Doesn't Believe What You Tell Them

The most helpful emails in health
Browse our free newsletters

I was diagnosed with bipolar when I was 19 years old. This didn’t really come as a surprise to me. It did, however, pretty quickly come to feel like some kind of trap.

When I was in high school there were some clues this was coming. I would have have alternating weeks of exhaustion and mediocre productivity with weeks of eager and frenzied activity and projects. These changes in both behavior and internal environment were always accompanied by a very observable change in my grades. Teachers would comment on both my potential and my unreliability. My insight and my lack of attention. I would feel enraged, desperate, in agonizing emotional pain, passionately focused, exhausted. I also had been through therapy, medications and various school counseling appointments for years.

I was diagnosed with major depressive disorder and ADHD at 9 years old. I didn’t really want to feel strapped down and wrung through a system again and again which had already left me frustrated by the age of 16. I decided to keep my suspicions to myself.

Then came the summer that I turned 19. The details are not essential but it is sufficient to say “I lost it” that summer and had a hard time finding it again on my own.

Here’s where things got tricky. In the ER I was given a medication with instructions. I was given a referral to providers. I was given a diagnosis of bipolar. I was “sent on my merry way.” About a week later when I started having problems with the medication I could not get in touch with the ER doctor who prescribed it. I still had not been able to secure an appointment with a new doctor.

I didn’t know how to explain to anyone why I was so slow to move and talk. The medication made me exhausted, heavy and dull. I couldn’t think. It felt more oppressive than any depression I’d ever felt.

I stopped taking the medication. When I finally got in to see a new doctor she gave me a hard time for stopping the medication. She suggested I was being careless and even that I was “non-compliant.”

When she gave me a choice between two medications she strongly suggested one of them. That particular medication resulted in feeling generally irritated and lead to a period of being awake for over 50 hours straight. I was also calling people I’d never met at 3 a.m. to plan international vacations. This is not my normal.

I told my prescriber and she suggested increasing the dosage. I didn’t want to be “difficult” and did as she suggested.

A higher dosage came with new problems.

I finally got some sleep at night but was increasingly agitated. I also was starting to hear things. I didn’t feel like I had a lot of choice right then to stop the medication or even complain again. Maybe I just needed to push through and adjust to the medication.

On the fifth night or so after increasing the dosage I finally fell asleep easily and slept through the night. Maybe things had just suddenly reset somehow. This was surprising since immediately after increasing the dosage actually falling asleep had been bit difficult.

I would be lying in bed waiting to fall asleep and think I heard things.

The last couple of nights I’d been convinced there were snakes on the floor and that was what I was hearing. My boyfriend had personal experience of a lot of the things I was going through. It was a comfort to be around him and I had been staying with him. At night I would lie in the dark and say:

“There are things on the floor I swear! I mean… right? Are there?”

I really wasn’t sure. I knew the medication was kind of doing a number on my brain. I was also struggling with the idea that this new doctor had some kind of power over me. My mom couldn’t be there to “protect” me in the way she had in the ER. The doctor had convinced me I was a screw up. She thought I messed around with my medication or didn’t want to get better. I was a risk to be controlled. I was scared of being controlled.

But the snakes: The night before everything seemed to reset itself — before I finally slept solidly for a change — neither my boyfriend’s assurances nor my own were enough to counter the thoughts I was having. I thought I was hearing slithering across the wooden floor. I tried to push over a heavy wooden bookshelf next to the bed to stop the noisy snakes. My boyfriend stopped me. He was really nice about it. I felt silly.

Suddenly, though, everything seemed fixed. I went from hearing snakes and tipping bookshelves to sleeping soundly.

The doctor was right. I needed time to adjust. My boyfriend and I were at breakfast that morning with some friends and I felt a little more normal. Suddenly one of my friends looked at me pointedly:

“Wow, some night last night huh?”

I was confused and thought maybe they meant the night with the bookcase and the yelling and the snakes.

No, they meant last night. They pointed out my arm — which had a clear bruise in the shape of a hand print between my wrist and elbow. I was confused. I was also suddenly suspicious that I had not had the solid restful sleep I thought. I was suspicious my boyfriend had a stressful night he was not prepared to discuss quite yet. This was true.

I laughed. I looked at my boyfriend. He laughed. Everyone thought we were embarrassed because something incredibly naughty had happened between us.

What actually did happen after weeks of bad reactions to a medication is this: I blacked out.

On the night in question I started in on the snakes nonsense as soon as my boyfriend turned out the light. I tried to flip the bookcase again. At some point I was so worked up, scared and confused that I thought either he was the snake or I wanted him to walk the room and check for snakes — or both. I was so upset I was lashing out physically. In an effort to keep me from hitting the wall or his face my boyfriend held me and my arm.

When I relayed this experience to my provider she at first did not believe me. I told her I refused to continue to take the medication any longer and she began to suggest that perhaps I needed to have a more significant level of support. It was as though the effects of the medication, which made me respond to things in ways I never would have otherwise, were not a factor in the current situation. When she started asking where I was I was glad I had this conversation with my doctor over the phone. I became increasingly nervous as she asked — really demanded — that I come into her office as soon as possible. My impression was that she was attributing the side effects I reported to some kind of decompensation instead of effects of a medication which I had repeatedly reported to have negative effects.

I was telling my doctor that the medication she had prescribed me had — essentially — put me into a state where I experienced dissociation, hallucinations, panic and put both me and those close to me at risk. Her response to my self-report was to suggest that the symptoms of my condition had become worse — and would have regardless of the medication. She felt I needed more supervision or to report to a hospital.

This felt like I was being lead into a trap. If I was diagnosed as bipolar than anything that happened or anything I experienced had to be because of the bipolar. I didn’t want that for myself. I couldn’t trust a provider who would not trust me to know myself or my experience.

I told her I was not going to be seeing her again.

I had to decide what was right for me. I had complicated feelings about being diagnosed — but none of those feelings told me I should simply hand my life and judgment over to someone else. Not only did that scare me but it also meant I would not get specific things I needed. To feel safe I’d have to pretend to be comfortable with whatever decisions were made for me. That isn’t safe. 

I have worried about being forever marked “the non-compliant patient,” but any truly decent provider and supporter I have had has listened to what I say and feel and incorporated that into a treatment plan. I deserve the dignity of that risk. The fact that I get depressed, stressed, “overly passionate” and have been diagnosed with bipolar does not change the fact that I deserve compassionate care. 

Integral to that care is feeling heard, feeling seen, feeling respected. Regardless of whether someone shares a personal perspective, thought or feeling — to care for a person’s well-being is to hear them. I need someone to hear me. To support me is to respect that my experience and knowledge of that experience are both real and valid.

Even if I am bipolar.

Getty image via Alpha-C

Originally published: October 28, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home