The Who, How and Why of people tapering off their medication # 1
Hey, I want to start a little series here on this site. A pretty narrow-minded one to be sure, but one that I think would at least be important for me. I want to gather data on why people stop taking their psych medicine, with all the contextual muck included in the calculation. We all know that there is some medicines out there that does not work, and sometimes even makes the situation for the mentally ill worse. Maybe the medicine is just produced to seduce the short term symptoms but have long term bad effects or the patient is flat out misdiagnosed. When I now start gather up data on why people stop take their medicine I hope to shed some light of this interesting dynamic between the individual patient, the psychiatry and big pharmacy and perhaps i'll find some casual connections between particular drugs in question. Just to be clear: I am not starting out with an anti-psychiatry bias. I have had no personal history with that institution and I think it is obvious that medication has a strong place in a healthy recovery. This series is just meant to precise where that place is.
But before we begin, when I picked Laura Delano as my first "case" I didn't really know what I got into. But what I found was a powerful voice in the psychiatric survivors community that has really gone over and beyond duty to spread awareness of some of the psychiatry's destructive effects and to teach people to trust their own gut more. I have tried to represent her story fair and square with her own words, but sometimes my own lingo will off course intervene too. If anyone is interested in knowing more of her work I fondly recommend you too check out the Inner Compass Initiative website.
Case 1
Who stopped taking the medication?
Laura Delano, Executive Director on the Inner Compass Initiative
What mental sickness was the patient diagnosed with and at what age?
She was diagnosed by Bipolar disorder at the age of 14 but was also diagnosed with treatment resistance disorder sometime over the age of 18
What medication were the patient prescribed that he/she eventually stopped take?
Lithium (mood stabilizer), Lamictal (anticonvulsant), Effexor (antidepressant), Ativan (benzodiazepine), Abilify (antipsychotic)
How was the patients life leading up to the diagnose/the prescription of the medication?
She was experiencing unusually strong mood swings in her early teenage years, starting at the age of 13, unusually strong even for a child going through puberty. What really scared her parents was her intense feelings of rage. Delano says herself that the outlashes had been building up over time from years of suppressing them while pursuing a “good girl” model of life. The breaking point is described as an out of body experience in front of her bathroom mirror when she saw clearly how she was being controlled by forces out of her control, the social system, her parents expectations etc. and a resentment that followed. Apart from reacting with rage she also became severally depressed in periods, cutting herself and thought a lot about death. As this new attitude seemed to came out of nowhere to her parents, and as her mood swings got more intense, they decided to send her to a psychiatrist for a check up. There she was, now at the age 14, diagnosed with having booth mania and depression and that it most likely meant that she had bipolar disorder.
How was the patients life and his/her relationship with his/her medication while still taking them?
It varied a lot over the years. Initially she refused the diagnosis, she refused taking the prescribed medication and labeling herself as mentally ill. The idea of her being broken, depressed and had an eating disorder continued to haunt her, but only in the subconscious. It was not until she reached a personal bottom at the age of 18 after months of self-destructive behavior that she embraced that she probably was bipolar and that's when she started taking her medication regularly. For the longest time after that, until she was 27, her disorder became her whole identity. She wanted to be the best patient that ever was and believed strongly that the only true way to be healthy was to follow everything her psychiatrist said. She describes her medication bag as her security blanket that she always carried with her.
But the deeper that she eventually went into the mental health system the sicker she got.They switched up her medication all the time but when nothing worked they described her as having “treatment resistance disorder”. They were very open with that it probably was chronic and that she probably would have all these psychological and physical problems for the rest of her life.
Why and when did the patient eventually stop?
In 2010 she found herself feeling more and more helpless, disconnected from reality and depressed. She had started behaviors like alcoholism and the thoughts of death came back in full force. At the same time she had three different experiences of psychiatric force that together took a toll on her faith in the mental health system. She was forced into a hospital without her consent, was forced to take a drug that she did not want to take and a therapist called the police on her when she missed an appointment. That’s when she stumbled on the book Anatomy of an epidemic by Robert Whitaker which strongly pushes the thesis that psychiatric drugs are far more dangerous then what most science would want you to believe. She read the book under just one night and it changed profoundly how she looked at her medicine. Suddenly she thought that a lot of the health issued she has had over the years was not a symptom of her treatment resistance/bipolar disorder but more likely a symptom of all the drugs she was forced to take. After that a deep curiosity of how she would feel, and who she could be, without her medication took a hold of her.
How was the withdrawal period?
She came of them under a period of five months, which is according to Delano basically like quitting cold turkey when you are dealing with as many medicines and something extremely risky. But that just shows of ill informed she was of the withdrawal process. She got no help from her psychiatrist in any real way even if they agreed that she could try to tapper of the medication. She describes it as the hardest thing she have ever done in her life. In many ways she was more protected then others, she lived with her very supportive extended family and did not have to worry about paying rent or making food for herself and was out of the public's eye during her more psychotic moments. Physically she experienced horrible stomach pain, chronic headache, “disgusting huge boils erupting on her neck, back and face”, strange smells from her skin and periods of just sharp muscle pain. Mentally she was as distressed as you would have imagine, and fled to endless hours of South Park to distract herself, something that she jokingly attributes as a life saver. What got her through the pain was a strong conviction that the pain was a sign of the body healing itself.
What was the aftermath?
At year 3 off she started to come alive. Her metabolism started to correct herself, she started to feel mental clarity, she started to experience reality in a more direct way then earlier while her sexual dysfunctions started to get better too. She remembered herself waking up eager to learn what new emotions she will embody that day. She also felt this strong urge to teach and help other people to stop depending on the mental health system. 2017, together with some fellow enthusiasts Delano launched the Inner Compass Initiative, a non-profit social change organization, a hub connecting people battling the dark side of the psychiatry to information surrounding their medication and people going through the same thing.
Does the patient still use any other medication and if so why?
She does not.
Does the patient have any stand out opinion of anything related to the pharmacologic therapeutic way?
Laura Delano is generally very skeptical of the pharmacological way and think that the over dependence on expertise leaves a lot of people in the ditch. One of the biggest reasons that she co-created the Inner Compass Initiative is to start a local uprising where people use internet and the comfort of each other to heal themselves. She does not approve of most of the DSM. She also attributes big chunk of her own healing in switching to a high fat low carbs-diet and generally cutting down on the unnecessary chemical toxins in her environment.
Does the patient describe any interesting stand out phenomenological happenings that he/she attributes to the medication or the withdrawal from it?
One of the huge flaws of the medication and the psychiatry in general is in Delano’s view that it steals from people their agency. They do not longer have the confidence to feel for themselves what their body get nurtured by but instead have an over reliance on their pill bottles descriptions. One quirky thing about her withdrawal period, that I would have found particularly weird, is that her skin started to smell like a chemical factory.
And that's it. Cool stuff. I'm looking forward to when I have a whole chunk of these and we can start to draw some real conclusions. But for now I think I will let Fiona Apple play me out with a gorgeous reminder of how icky the path to feeling everything is. https://open.spotify.com/track/23B1awnmd30YfsPSYsfrUf
References
Podcasts
Madness radio - Coming of your Meds: Laura Delano, Life After Psych Meds: Laura Delano
Mad in America - Episode 40