A reader, whom I’ll call ES, has generously provided the following account of her experience with antipsychotic drugs, starting when she was 13. I think she provides a very nuanced perspective.

She posted her story in the comments section of a previous blog entry, but I’m reposting here. She’s agreed to take questions if there are particular aspects of her experience people would like to hear more about.

Also, feel free to email me at kaitlin.b.barnett [at] gmail.com if you’d like to share your story. Two questions I’d add to my original list: a) Did you get a diagnosis that you were aware of? Did you think it accurately described the problems that were troubling you?

How did you feel about having a diagnosis or a “label” – was it helpful in justifying the need for medication, did you feel it needlessly pathologized you, etc.? and b) If you no longer take medication, how and why did you stop taking it?

ES’s response, with my prompts in italics:

1) How did you start taking medication in the first place? At the time, did you think you needed medication?
I took my first dose of medication the night before I was hospitalized for the first time; plans to directly admit me had been made earlier that day and the medication, an antipsychotic sample, was being taken to get me through the night. And I welcomed it fully. The past few months had been emotionally grueling for me and I was terrified that I was going to end up dead via my own self-injurious means. I wanted “it” — the depression, the dysregulated moods, the psychosis — to stop. I was 13.

2) If a doctor or parent provided an explanation of why you were being prescribed psychiatric drugs, how did they explain it? Did they ever explain it as a “chemical imbalance?” What was your reaction to their explanation?
I was very involved in my care and always had been. Coming into that appointment, I had feeling that this would be it — that I would be hospitalized, given medication, etc — as there was no other choice. As such, I had also done my research and knew all about the chemical imbalance theory. It was to my surprise that my psychiatrist — an 80s trained, psychoanalytic-leaning physician — never used those terms and, in fact, affirmed multiple times over the next months that the medication was needed as I could not control my impulses/stop myself from hurting myself. He didn’t believe in chemical imbalances.

(My parents had more problems than I did and, as such, were not that involved in my care).

3) Did medication feel like what you expected? Why or why not?
Yes and no. It did not help as much as I had expected it to, in that I still suffered from what were at times debilitating symptoms (severe anxiety, paranoia, etc) months after beginning taking them. I also didn’t expect the side effects to be so uncomfortable and severe, especially with the sedation. On the other hand, they did still help quite a bit and that was expected.

4) Did you experience any troubling side effects? What was it about the side effects that was so troubling? Did you experience any unexpected benefits?
Yes, I experienced a wide range of side effects — sedation, fatigue, severe weight gain (that I still have not all burned off), neurological symptoms (muscular twitches), eye symptoms (Nystagmous), heart problems (Prolonged QT), etc. They stopped me from doing what I loved — academics — and brought up new concerns about my health.

5) Did you talk to friends or family members about your disorder or the fact that you took medication? If you still take medication, are you more open about it now?
Yes, I did; but a significant percentage of my friends also suffered from mental health issues. I no longer take medication; however, I still have a wonderful group of friends I can talk to about my mental health ups and downs.

6) What kind of relationship did you have with the doctor who prescribed your medication? Did you also see a therapist or experiment with other therapeutic methods to treat your symptoms?
My psychiatrist was my therapist and, in fact, I had seen him for a year before he prescribed anything. My relationship with him was wonderful — still is — and he became the father figure I was so desperately needed in my life. He has saved my life many times over and I will forever be thankful.

7) Did you – or do you – see medications as a temporary solution, or a long-term commitment?
At first, I saw it as a long-term commitment needed to manage the chemical imbalance in my brain. I no longer think this way, much to the credit of my psychiatrist, and now view it as a more individual process. For some people, it is a temporary solution; for others, it will be needed long term.

8 ) Did medication itself – or just knowing that you took medication – change the way you thought about yourself?
Yes. It caused massive over-identification with the idea of being mentally ill. I stopped seeing my experiences as personal and just part of a disease process.

9) Did you ever stop taking a medication or change a dosage without telling your doctor? Why?
Not in the long term. I didn’t take them a few times during my second hospitalization — without telling anyone, of course — and that was in an attempt to, I think, regain control. I didn’t want to be there; it was forced. Not taking medication was a way to take some of that power back. I never felt the need to do that with my outpatient psychiatrist, though.

10)  Did a medication ever stop working for you? What was that like?
No. They just never fully worked in the first place.

11) Do you wish you’d begun taking medication earlier or later in your life? Is there anything else you’d change about the circumstances under which you began taking it?
This is a difficult question. I don’t think, at this point, I would change anything about my experiences. They are a part of who I am and, as I do like myself now, I don’t want to change that.

On the other hand, I do sort of wish I had started them earlier, in a situation that did not involve the trauma of hospitalization.

12) Has taking medication from a young age had any other lasting impact on you?
Physical problems I still grapple with.

And perspective. Medication saved my life and I don’t regret going on them; but I don’t regret going off them, either (with my doctor’s full support — he was the one to propose the idea). I hate the polarization within the mental health community in the medication vs anti-medication debate. Every person is different and, though someone needs to be fully informed, demeaning someone for their choice — either to go on or go off medication — is immature. I can see both sides and, coming from that perspective, I think I gained an appreciation for the differences that exist among people experiencing a similar thing.

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Pills photo available from Shutterstock.

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    Last reviewed: 9 Feb 2012