Yes, I did see Bessel’s trauma-sensitive yoga program, but the program requires participants be enrolled in therapy, which isn’t realistic or desirable for all.
Yes, I did see Bessel’s trauma-sensitive yoga program, but the program requires participants be enrolled in therapy, which isn’t realistic or desirable for all.
Ps. You’ll be exactly the brave teacher so many people need. I actually googled trauma-informed yoga, etc. before coming back to the mat. I didn’t find anything accessible!
Meaghan! This is incredible. I’m so glad you wrote about yoga and trauma. Just got back from day two of class after 5 years away in withdrawal. All kinds of nausea and aches and memories, and lots of tears too. 🙂 Sending thanks and blessings on your journey. – Vanessa
I appreciate your point here about the success of peer-based addictions recovery communities. AAs success, for example, has really challenged folks in professional roles to acknowledge the value of lived experience. And in education – medicine, nursing, and professional counseling – students are often now required to attend meetings to get a small sense for what’s on offer in our communities. It’d be interesting if they more embraced the value of all kinds of distress in this way too.
I disagree that “normies” should step aside because I don’t believe shared lived experience is an essential qualification for providing meaningful support to others. I think having “been there” is absolutely valuable, but not essential, and can sometimes even be barrier to the goal of meeting each person where they are, seeing them as they are, instead of through the lens of our own experience and with our personal values and/or goals in mind.
I think qualities like, for example, deep listening skills, open/nonjudgmental attitudes, and a belief in the other person’s essential value and capacity to connect with their heart’s desire or purpose can make for valuable supportive connection, regardless of experience.
What a great story! Thanks for sharing here. Nothing beats loving, supportive community.
I think you make a good point about a lack of safety. Fear, discrimination, and then internalized-stigma create this feedback loop that makes healing difficult for all, including folks in positions of power.
In moments I’ve definitely felt like I was “passing” in this really practical but soul-crushing way given where I am in my process and training, not to mention my location – i.e. hospitals. And I wonder sometimes if I’m not taking the wrong road. But, then I think of what I needed and couldn’t find, which was a provider who could think critically about psychiatric drugs, who could offer good information and options – i.e. no sound bites or bad science in metaphors – and, ultimately, help me taper off while believing in what I was going through. For now, feels like I’m too close to maybe being able to offer this to others to give up.
I hope you’ll consider sharing your experience with the project down the road.
Cheers to radical change!
Appreciating this post, Monica. Hanging in today with hot epsom salt bathes and clean pajamas. Healing certainly does happen… in odd fits, starts, and set-backs. Believing when the knowing fades is sooo important. Thanks for the reminder. In solidarity, Vanessa
Great Article, Jacks! Thank you.
Thanks, Ron! I hope to make it. Also posted the link to my school’s student communications site. -Vanessa
Welcome to Mad in America! Thanks for taking the time to read comment. I do hope you check out other articles. It’d be great to read more of your contributions around here.
I checked out PenRelief.com. What an incredible resource! – “1100 visitors a month, from 39 different countries”.
Thank you for the work you do. I didn’t realize Sept 10th was international suicide day. I’ll be lighting a candle here in the US. – Vanessa
It’s good to read your comment here. I also believe he was failed by the system. Any one who is told that they have a brain disorder ( as a teenager no less) has been failed by the system.
I’m glad I was able to be there for my friend too. Often friends and family members don’t get such an opportunity. I feel lucky. I do want to clarify your point about the hospital staff not being able to help. The emergency nursing/MD staff absolutely saved his life. I’m very grateful to them.
“your willingness to feel his pain is your strength…”.. These words…Yes! I think much of what gets diagnosed at some point as depression is a kind of sensitivity and compassion. An ability to feel other other people’s pain.
I’ve been thinking about your comment for a day now. I’m deeply moved by what you’ve shared. I am so sorry to hear you lost your son to suicide. I cannot imagine what this is like. I wonder if you’ve read Maria Bradshaw’s piece on suicide and grief here on MiA, and if her words resonated with you? They had a tremendous impact on me.
I agree. The threat of labels and forced intervention so often isolates and shames the person who, like your son, wants and needs to connect with and be heard by another human being.
I do appreciate your words of encouragement. There are so many incredible people working in all capacites to change the system, offer alternatives, and/or build thriving communities. I’m inspired by what I see. Have more I could say, but got the 5 minute flash indictaor that my time is up at the library…Off for now — Thank you again. Vanessa
Thanks, Ted! I always enjoy your posts and comments. Will look forward to hearing more from you on MiA soon. – Vanessa
Cannotsay – Glad to hear you checked it out. . Thanks for posting a link to the audio!
I’m so glad you connected with his writing! I’ve also often wished that I had the chance to talk with him. I’m very grateful for his life and work. I hope you enjoy the new book.
Thanks for reading,
Thank you, Chaya!
“Perhaps a degree of uncertainty is a good thing. We should never mistake the map we are using for the territory itself.”
Rachel – thank you for sharing your story and for reminding folks that language and stories matter. Like Wyatt, I met you via Skype at the Western MA RLC Hearing Voices Facilitator Training. You were/are an inspiration!
Me too 🙂
Yes! And an admirable quality.
I first saw you on Youtube. It was a clip of you speaking at the APA protest in Phili–I watched from my bed, aching and panicked, going through a terrifying period of psych drug withdrawal.
In this clip you shared bits about your experience at Bellevue, and your hopes for a better way. You invited anyone else who made it into the system as a child or teenager to contact you. Your speech, and that invitation, made me feel less alone, understood, and cared for.
I didn’t contact you. But months later we connected when you did something very Ted-like and challenged my second MIA blog post, thinking I was “just another provider”! ( Now you know, I’m not even a provider, just a student) But it was great to be challenged and to challenge you back. I love that about you.
Thanks for being you and a part of this community. I look forward to reading your memoir!
” it’s best not to encourage a sense of being responsible for one another’s lives and wellness, but to focus on being responsible for ourselves in identifying needs, meeting them when we can, and accepting that sometimes our needs might not be met and that is – in the broad scope of things – just how it is, but we have to keep going anyway, trusting that people care about us and that the world somehow wants us to be okay.”
Absolutely. I agree, and I do see mentorship an opportunity, while not for everyone, to help someone identify the things they can do to meet their own needs, and how to cope with the feelings of loneliness or abandonment that come up when, at some point, we inevitably don’t get the human support we’re looking for, or when we get none at all. Then how to find creativity and direction in that moment.
I think mentorship can be about learning how to be a friend to ourselves and other people, whether the mentor is a “friend” in the traditional sense of the word, or not. For so long, I couldn’t or didn’t know how to do this! Or I felt so awful and disconnected from myself that I gave up trying.
I needed to learn (still learning!) how to be supportive, how to listen, and how to say ‘no’, or not respond at all when I feel a pull to lessen someone else’s pain when I’m not available, or would rather be doing something else that might serve me and the world a little more.
“So, there are lots of ways to be supportive.” Yes, yes.
Thanks again for this post, Faith.
I’m so sorry to hear that you lost someone in your community. Thank you for articulating some of what this loss was like for you, and for naming a larger problem: that our communities need more skills, tools, and time to help one another.
I love your compassion for the inevitable “falling short”, which, as you point out, seems to be about needing to care for our selves, and our “small worlds”.
As far as improving support networks, mentor relationships work well. I wonder if the radical mental health collective uses this model? I was a mentor, and had a mentor…support was given and received equally (think 12 step sponsor) and in a more predictable manner. Boundaries were clear, like, “We meet for one hour on Wednesdays”. But, it was also a friendship, no money exchanged…like holding hands in the dark.
Thank you for this great post.
A small contribution to this conversation and thread:
This recently published article (above), “A Decade of Reversal: An analysis of 146 Contradicted Medical Practices”, suggests that–assuming psychiatric practice is no exception to the prevalent trend of ‘medical reversals’ in other areas of medicine– Bob’s data-driven invitation to change protocols and sponsor more pointed research is not at all without precedent.:
The article reads:
“Recently, a project of BMJ, entitled Clinical Evidence, 81 completed a review of 3000 medical practices. The project found that slightly more than a third of medical practices are effective or likely to be effective; 15% are harmful, unlikely to be beneficial, or a trade- off between benefits and harms; and 50% are of unknown effectiveness. Our investigation complements these data and suggests that a high percentage of all practices may ultimately be found to have no net benefits.”
Yes!!! Well done.
“But sometimes you reach a critical mass, and the writing is on the wall. As media producers, we have the privilege and responsibility of paying forward the power of these stories.”
Thank you, PJ. -Vanessa
“When it comes down to what is and what isn’t it shouldn’t have to do with “normal” it should have to do with suffering and not functioning well… In my mind if you are sick you need help to get better, it doesn’t mean you are bad or defective. And that goes for me too if I am sick.”
Thank you, Scott. Seems that we all share an interest in seeing that a person in severe distress gets help (assuming they want some kind of help), but that’s where it gets tricky. What does it mean to help someone? And this isn’t an impractical, philosophical question either. Usually “help” assumes a set of shared values, which in America is about, “how can we change or stop this as soon as possible?”, as opposed to staying curious and supportive by listening (to the person and/or body) for meaning. What is this “symptom” trying to communicate? In this way, a fever or ‘delusional’ beliefs, for example, are not a problem, but an important messenger. And often the mental health patient’s symptom not only carries an important message for him or herself, but also for the family and community. If we remain open, what we call mental illness is a profound opportunity for transformation and can a great gift the community.
About autism… I have lots of thoughts. For now I’ll say that I live with a close friend who carries a diagnosis of autism. He is mostly non-verbal, and cannot work or cook or use the bathroom himself. He has many ‘tantrums’, and in moments of acute frustration is aggressive. But he doesn’t consider himself diseased or sick. He’s keenly sensitive and funny and doesn’t care what anyone thinks of him. His differences have connected, challenged and grown hundreds of people over the course of his lifetime. And yes, he struggles very, very much. But he thinks ‘normal’ people do too. He’s written at length about we are hysterically (and tragically) self-obsessed and vain, and take ourselves and our ideas way too seriously.
On that note, I’m going outside to play!
ScottW. Thanks for reading and responding. You say you understand the point that labels are hurtful (and probably contribute to chronicity of the distress which psychiatry ostensibly seeks to alleviate) but that you, “…have a different view intellectually about whether it is accurate to call these phenomena illnesses or not”.
Your self-proclaimed “intellectual understanding” of someone’s own experience (!!) is called a moral judgment, which has nothing to do with intellect.
I’m jumping onto this thread and want to preface my comments by saying thank you to Faith, ScottW, and David, Duane, Susan, Cannotsay, and everyone for generating ideas, emotion, and dialogue. I’v been away from the reply section for a while but have enjoyed reading your contributions….My comments to ScottW (below) are my own. If you do read them, ScottW, keep in mind that I don’t and could never speak for Faith, at whom you’re comments were directed.
Here goes: you wrote, “In reality I would say almost all medications only correct problems symptomatically. Often the underlying cause of the disease is unknown or it cannot be corrected. Surgery is one of the few fields in medicine where causes of disease are actually fixed.”
Yes! Ninety-nine percent of all drugs on the market do not treat a disease process. Of course, this includes all psychiatric medications. Thank you for raising this point. It’s important and is often missed completely. Unfortunately, it seems that pharma’s marketing techniques greatly exaggerate the benefits and downplay the risks, while intentionally making the mechanism of action and inserts confusing for potential consumers/users/people seeking help. However, you say drugs “correct problems symptomatically”, which is not true. They can mask a particular symptom, often for a finite period of time, and often while creating a new problem (there’s no such thing as a selective drugs) or taxing the body in some other way. So, a simple “correction of symptoms” is impossible.
But more importantly, it’s seems you’re missing the most fundamental message with has nothing to do with studies or semantics. Faith, who wrote this absolutely beautiful and thoughtful piece, and I, and rest of the people in this movement are saying that being called sick or ill by the medical establishment for being neurodivergent or experiencing altered or extreme states of consciousness feels hurtful, insulting, and is actually harmful. And, if the medical establishment is working with people in such a way that feels hurtful and is harmful, while claiming to know something about a mysterious disease process at the root of the person’s suffering when they don’t, why operate in this way? Why not listen to the people they aspire to serve, and take note? Why not call it ‘distress’. Why not say, loudly and without shame, “We don’t know why you are suffering in this way. But we can work with you, if you’d like, to identify ways to work through this, or to make meaning out of it, or to change what can be changed, or to explore the use of a drug which might help (and/or hurt) you….” Why not use language which reflects honestly, respect, and a little humility about what we don’t know?
Monica’s journey is vital for people to read and understand. She is right that, for the person who has not been on these drugs, or hasn’t been on them for long periods of time, a withdrawal this painful and protracted is almost inconceivable. What a gift to you and to us to have your clarity of mind restored! Thank you for sharing this. “There is [also] no going back” for those who have been helped by this community space, and for all the commentary and contributors which make its dialogue so dynamic. Thanks, Monica!
Cledwyn–I am not saying good intentions are enough, or that one’s ignorance should be excused. Good intentions took 17 years of my own life.
I don’t make this point to offset or minimize the problem. I make this point– that many psychiatrists are well-meaning– to demonstrate exactly how extremely dangerous bio-psychiatry is– it’s harm hiding beneath the veil of medicine and good will.
Yes Belinda It is a real problem. I’m under no delusions about the field right now. Well meaning people have no idea how harmful these drugs and labels can be, or how complicated the withdrawal process is for so many people.
Will and everyone–Thanks of the discussion. Unfortunately, this topic is is systematically ignored, for the most part, in education and practice. I’m currently in a psychiatric nurse practitioner program which teaches us– from day three–about the merits of psychiatric drugs, and how to prescribe them, but says nothing about how to taper people off. We are being trained to do half of a job. This negligence is not only a reflection of current inadequate practices but also sets us up for negligent future practice. It’s time for this to change.
The elephant in the room here is the fact that we–peers and people with lived experience–are filling a huge gap. That practitioners and pharmaceutical companies are, on the whole, are either unaware of or ignoring how devastating withdrawal can be, and so don’t have the tools to effectively help people come off. They don’t know how to ‘taper’ (which I do believe is a responsible goal, though not always going to fit with a person’s needs or wishes) people off psych drugs because they made a decision not to study the long term effects of these drugs, or the tapering/withdrawal process. This post, online sites, manuals, all of our voices– we’re scrambling to make sense of a system that is ignoring the real needs of the community it is paid to serve. Leaving this fact out of the story paints an incomplete picture of the issue at hand.
The idea that everyone has a different experience with psychiatric drugs, and that some people can come off without much trouble, says nothing about their individual case, and so makes the success rate seem totally random. In fact, there may be good reason why some are able to come off, while others are not. I want to know: Which drugs were they on, how many different classes of drugs, and for how long? What kind of resources did they have in place to support them through the withdrawal process? If we got funding to do research (!!) my guess is we’d see that those who were very sick in the withdrawal process shared some circumstances in common: length of ‘treatment’, class of medication, number of medications, financial resources. In this way we’d have a clearer picture of the risks of these drugs, and professionals might have a better idea of how to support people (who are looking for assistance) to come off of them in a way that will be least harmful.
You are so brave. Thank you for sharing your journey, courage and faith with strangers. I hope we get to hear more from you. Blessings-Vanessa
Thanks for sharing for story. Really beautifully written. Benzos were, for me, the most difficult drug to come off of. Actually, difficult is a mild descriptive term. I worried I was losing my mind. I stuttered. I could not remember why I walked into a room. I couldn’t read and retain information. I mostly felt panicked, or dead inside. It is a dangerous drug.
Look forward to reading more of your writing.–Vanessa
Excellent work and thanks for sharing here. I look forward to reading Rethinking Madness. –Vanessa
Hi Michael– Any chance this training will make it to the east coast? Would love to attend.
Belinda– thanks for this. It’s great that you’ve made your way off the antipsychotics. Your experience is consistent with what i’ve seen in the foster care system. Suddenly, in 2001, so many young women were put on these drugs to control their behavior. In just a month they gained weight, became lethargic and their blood sugar sky-rocketed. That’s no way to address trauma.
When you’re speaking of ‘us’, it sounds like you’re excluding me. I was put in the system at 16 and managed my way out only 9 months ago–17 years later. That’s half my life. Did you know that?
There is more than one way to address the problem, and we’ll be drawn different approaches. If you have specific questions about what I’m doing to affect change in my community, or what my strategy is, I’m happy to fill you in.
Yes. I agree and once again appreciate your comments. Thank you.
Will check out the link.
Thanks for reading. Absolutely. In an open and working therapeutic relationship, there can be room for all perspectives, and all might be taken into consideration. It’s my understanding that this is part of what Open Dialogue seeks to accomplish? I’d be interested to hear more about what think, and how you’ve seen this value put into practice.
One problem is that the “open” conversation usually happens alongside of a provider’s or family member’s goal of adherence to antipsychotic drugs. In this way shared perspectives quickly become coercive. I strongly believe that people need unbiased advocates, whose license or community standing and relationships are not on the line. I’d like to think that doctors or family members can play this role. But with such an investment in a particular, controlled outcome, and at the expense of a loss of emotion, diabetes, depression, and all the things that can make esteem, communication and self-advocacy so difficult for one who takes antipsychotics, I don’t think it’s a likely possibility. At least not until providers consider new paradigms of care, which, i see you do. I thank you for that.
I’d be interested to hear more of your thoughts and experiences. I’m continuing to research and think about this problem and want to hear all perspectives.
Thanks so much for this post, Sandra.
Thanks so much Steve. Yes, the market interest is huge. Activism is critical. During my morning train commute I hear fearful ADHD diagnosis alerts, aimed at providers, prepping them to spot and ‘treat’ such behaviors. Something tells me we need more dynamic learning environments and farms, fewer additives and sugar snacks.
thanks for reading Stanley. I always appreciate your comments here. Glad you’re doing well.
Thanks so much for your support and comment. How wild that you read an excerpt from PN in an American History course!
Thanks for sharing that it took “Faith in yourself and time”. So important for people to hear, as withdrawal and repair can take a very long time. I’m so glad to hear it’s going well for you. Hope to hear more from you on here!
Thanks so much Duane! Always great to read your comments on here.
Hey David, Thanks for reading, and for your support. This website has been a huge help to me over the last 9 months. I’m grateful to every writer and reader on here. I do have a support network, many of whom I met on here! Don’t know how we can go through this kind of thing alone.
Great Article. Thanks so much for posting.