Deprescribing: The Social Movement at the Intersection of Mental Health, Human Rights, and Social Justice
I have been a part of the layperson psychiatric drug withdrawal community for about 9 years. I served in different roles within the community while simultaneously healing from my own injury. I was first a survivor who was desperate for answers as to what happened to me. Then, a benzo withdrawal online support group moderator who read comments, offered hope and supported thousands of people who were tapering or in withdrawal from benzodiazepines primarily. At four years since my cold turkey and still extremely ill, I applied and was accepted to serve as a Veterans of Foreign Wars legislative fellow where I did research exploring the relationship between veterans mental health, polypharmacy and suicide. I presented before over a dozen senators and representatives, briefed VFW staff and took white papers to Capitol Hill.
I also served as the veterans’ liaison at Benzodiazepine Information Coalition, was a team member at The Withdrawal Project / Inner Compass Initiative and served as Director of Outreach and Social Impact at Medicating Normal - the film amassing over 180 film screenings, events and live interviews bringing awareness to the public.
My current role is that of a coach, supporting hundreds of people individually, in group coaching sessions, and in speaking with their caregivers and health professionals. Each role has taught me something about psychiatric drug withdrawal, each from a different perspective - a person with lived experience, an advocate, a coach, a supporter, and as a thought leader on how to survive even the most severe injuries.
I have watched this movement gain momentum over the years and at times wondered if any of us working on this in a myriad of ways are even making a dent in this worldwide prescribed psychiatric medication dependence and harm epidemic. Many say this is worse than the opioid epidemic as it affects everyone from children to the elderly. What I have witnessed in these years has given me hope as I have seen momentum but sometimes it’s felt as if we are all screaming underwater.
Now, more than in many years passed, there are more news articles, documentary films, personal accounts being shared on TikTok, Instagram and YouTube, and doctors and other helping professionals trying to assist patients who are deprescribing. I have also noticed that patients are being harmed more than ever and are desperately seeking deprescribing support. So much so, that I am currently unable to keep up with the demand for my services hence my new website, new team and pending membership portal.
In 2022, after being emotionally exhausted from film screenings, interviews, and Zoom events sharing my story via Medicating Normal, I decided to quit all my paid and volunteer positions and focus on coaching people and building communities of support for those deprescribing. I started really small: only coaching a few people per month. Before I knew it, my coaching practice grew quickly, reaching over 100 clients per month from all over the world and hosting an average of 16 support circles per month for every stage of the deprescribing process. I hold eight tapering support circles, two acute withdrawal and post-acute, two protracted and two support caregivers each held twice monthly.
As a sufferer myself, still with mild lingering symptoms at nearly 9 years off all psychotropic drugs, I’ve learned even more about psychiatric drug withdrawal just from sitting with people who were also going through it, by listening, by loving them, knowing I couldn’t take it away or fix it even though I wish I could. My clients have taught me more than I could ever learn from training, books or programs. They have taught me about suffering, about the very real life and death issues they face, and they have taught me about love. Indeed, there is a culture and a psychology that has formed due to the silence of the medical establishments to provide any meaningful guidance for those of us who have been harmed by prescribing or deprescribing. The complexities of healing from the harms are immense and do not end the day your last pill is taken.
I’d like to share some of the things I have learned from you and my own path, below:
There are multiple reasons people come off psychiatric drugs. Sometimes, it’s just that they are suffering from side effects they don’t like. Other times it’s that they want to get pregnant or breastfeed. More often than not, it’s because they feel like they’ve lost parts of themselves, they don’t feel good, they feel numb, and the medication has taken away the happy, good feelings they used to know. The medications don't just take away the depression or anxiety, it takes more than that, and they want it back.
Suffering is inevitable if you want to come off medications. For many I work with, they have to find a way to cope with severe and intense periods of suffering that no medication, updosing of medication, or coping skill can take away. You will have to find a new way to heal your pre-existing issues and any new ones that emerge from this process if medication never did or no longer works for you.
You will learn about yourself more than you would through just about any other human experience that exists. It will push you in ways you cannot imagine. You will grow and it will hurt but you will come out a victor. What happened was not fair, and should have never happened, and it will be your burden and responsibility to get through it, but you can and will do it. What is at the end of this will be worth fighting for and your transformation will come with silver linings and gifts you wouldn’t get had this experience not happened to you.
You may lose friends, family members, social support, perhaps your job, your femininity or masculinity, and your very self. You will go through the fire of suffering, like a blacksmith heats and hammers a knife. But, the real “you” is still in there. The real you is what helped you figure out what was happening, is what led you to reading these words right now, helped you find the answers you needed and will help you get you through to the end. Trust that part of you above all else.
Many patients have lost their faith in the systems designed to help them. They have been gaslit by just about every mental and medical profession they have come in contact with. They have brought articles, sent emails and letters, showed films or videos, bought the Maudsley Deprescribing Guidelines book itself and handed it to their doctors and therapists. Most have been told that psychiatric drug injury/withdrawal and what they are experiencing does not exist. Patients are done. They have pulled themselves out of this antiquated system and taken their mental and physical health back into their own hands.
Patients get through drug injury, withdrawal, and recovery together. They hold hands with people in the online community and hang onto each other’s words, for sometimes years in order to get through this painful recovery process. They forge friendships that will last their whole lives. Many will meet in person, many sit with each other on speaker phone for entire days and weeks and months. We get through this together.
It has been an honor and privilege for me to heal in this community, for me to find you all because that was utterly lifesaving to me. Now, it is my sacred mission to sit with you while you heal, welcoming you into the community we have all co-created together. We will survive. We will thrive. We will have to be HeartCore at some moments but that love will get you through. Always.
