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Mental Health Matters – Coming Off Medications with Will Hall


Hi, welcome to Mental Health Matters. I�m
Shannon Eliot. I recently had a chance to catch up with Will
Hall at a mental health conference in Oakland. Will is a nationally recognized mental health
advocate, counselor, and speaker. As a teenager, Will was a community organizer
in peace, ecology, and anti-racism movements. But the trauma from his childhood and longtime
struggles with emotional distress landed him in a psychiatric hospital at age 26. After a difficult year in San Francisco�s
mental health system, he learned to care for his wellness through holistic health and spirituality.
I chatted with Will about stigma, the controversy around psychiatric medication, and how society
defines normality. Will, thank you for being here today. Welcome
to Oakland.>>Thank you. Thanks for having me.>>You�re certainly known internationally
for your mental health advocacy and your education. Before we get into that, could you tell me
a little bit about your story?>>Well I was diagnosed with schizophrenia
� schizoaffective disorder schizophrenia — and that�s a really big scary word. It�s
kind of one of the worst things that you can label someone with in the mental health system. That was a period in my life�I was living
in San Francisco and I was really suffering a lot. I was wandering the streets. I wanted
to kill myself. I was hearing really aggressive voices, angry aggressive voices. I was so
frightened of my roommates that I would lean out the window of the apartment. I was convinced
people were planning things to hurt me or that I was in some kind of danger. It was
a really difficult time in my life and I ended up in a hospital. I really trace a lot of
what I went through both to the trauma that I experienced in my childhood with my family.
My mother was a sexual abuse survivor and my father was a Korean war veteran; he was
also in the mental health system. But there was also this other piece of my
story, which was that I was always someone who experienced very unusual states of consciousness.
I always went into visionary states, extreme states. I would get very frightened and freeze
and not talk. Or I would have an ecstatic connection with nature and be fascinated with
imaginary worlds. And so when I finally did end up in the hospital I was looking for help,
but the system really gave me more trauma. It really wasn�t helpful to me. And I�m
not against people who are helped by hospitals � I know that is helpful to some people
� but for me, my experience was of abuse. And so since then, I�ve tried lots of different
medications. I was diagnosed with schizophrenia. They did all these different tests on me.
The medications weren�t helpful; in fact, they were really harmful to me. And again,
I�m not anti-medication. There are many people who take medications and they work
for them, but for me, that wasn�t the case. And then at some point I really sort of had
to find my own way out, to rely start to rely on my own resources. I had to unlearn a lot
of the things I was taught by the doctors and I had to go on an exploration, go on a
journey into myself and start exploring things. And one of the things that was most — there
were many things that were helpful � but one of the things that was most crucial was
the peer movement and getting connected with people like Oryx Cohen and folks at the Freedom
Center in Western Massachusetts and being able to talk about things that I had never
been able to talk about. And it�s been a long, long process. I was
on Social Security Disability for 10 years. I mean, you wouldn�t really recognize me
from those days from today. And now I�ve taken what I�ve learned from the peer movement
and what I�ve learned from myself, the one-on-one work that I�ve done, and I�ve gone on
to become a trainer and have a degree and I�m a therapist now in Portland, Oregon.
And I�m doing a lot of educational work around finding a different way to respond
to people who are in extreme states so people don�t have to do through what I had to go
through with the bad treatment and misunderstanding of my experience.>>So your experience and your abuse in the
system really inspired your activism.>>Absolutely. I was kind of drafted into being
a mental health advocate.>>So one of the things you�re most known
for is your pamphlet and your corresponding workshop on a harm reduction guide to coming
off medications. There is a commonly held belief in society as well as one held by a
lot of psychiatric professionals that if you are diagnosed with a mental illness, medication
is the way to be treated, that there are biological causes involved for mental illness. What would
you say to that?>>Well I wish there was a magic bullet, but
unfortunately there isn�t. And this is really a stereotype, that�s schizophrenia is a
brain disease and you treat the brain disease with a pill and that�s the best you can
do. You can�t cure it, but at least you can keep it under control. And again, I�m
not anti-medication, but there isn�t a scientific support or proof to say that we can look inside
our brains and decide that this is a schizophrenic brain, this is a depressed brain.>>So there�s no research to prove it.>>They have not been able to find anything
conclusive. And there�s always hints, there�s always possibilities. And off course, biology
plays a role in everything. But in terms of whether it�s actually determinant or destiny,
they haven�t ever come up with that test that can discriminate. And the other key thing
is that�s not how the drugs work. If you give an anti-psychotic drug to an animal or
give an anti-psychotic drug to someone who is not diagnosed with schizophrenia, they
are also going to have that tranquilizing effect. And this is something I had to learn
for myself because I was told, �Will, these drugs are treatment for disease and therefore
you need it.� And so I felt that there was something wrong with me when I wasn�t responding
to the drugs or when things got worse. And then I learned that actually those messages
were really backwards, that these aren�t treatments for disease. These are drugs that
are really tranquilizing us or stimulating us. Often it�s just the placebo effect � it�s
the belief in the drug � and sometimes that can be helpful but not for the reasons that
we think. And when I started doing peer recovery work,
a lot of people would come to our support groups with really basic questions. They had
no idea about their medications. And one of the things was well, is it possible to live
without medications? Can I come off my mediations? And this has become a huge taboo topic. I
think there�s a lot of fear around it. But the reality is that it is more dangerous to
not talk about coming off medications than it is to try to have open conversations. And
that�s because people are already trying to come off their medications. The side effects are horrible. The long-term
effects are very severe, all the way to possibly being life-threatening. Sometimes the medications
can make psychosis worse. They can dramatically lower the quality of life. And so there are
a lot of really good reasons for people to want medication alternatives. And again, I�m
not anti-medications. A lot of people find them helpful. But what we found is that doctors
don�t have the information. Therapists are afraid. Society isn�t providing the information.
The pharmaceutical companies want to get people on the drugs, so their answer is more drugs,
not getting people off. So we had to develop our own way of approaching this problem. And
the way I look at it is that any liberation movement � the gay rights movement, the
civil rights movement, or the women�s movement � has always had to challenge the science.
It�s always had to challenge the medical profession that was saying, well, midwives
aren�t any good and you should just go to the doctor. It was actually the women�s
movement that challenged that and now we accept that midwives are a valid approach. And that�s
exactly what we�re doing with this educational work around coming off medications. People need information. They need some kind
of support. And the most important thing is you want to be smart about it. And people
were going off without any kind of information. They were going off without any really kind
of guidance. And now the guide that I wrote � the �Harm Reduction Guide to Coming
Off Psychiatric Drugs � has been translated into many different languages. It�s been
downloaded off the Internet thousands of times. It�s available for free online. And what
we find is that a harm reduction approach is really the way to go. That�s not to say
it�s better to be off medications or that it�s better to be on medications, but to
take an approach where you�re really meeting people where they�re at and being flexible
with their experience. There are a few basic guidelines, like usually
going slower is better. We know from when you�re taking coffee or drinking coffee
and that caffeine is affecting you, if you go cold turkey off that caffeine that you�re
taking every day, you�re going to get headaches. So it�s a similar principle with medication.>>So imagine if you have something much much
stronger than that.>>Exactly. So going off slowly and withdrawing
step-by-step is often the best way to go, although everybody is different. Another thing
we also have learned is that the withdrawal effects themselves can also look like psychosis.
So people start to withdraw, they have a psychosis, and then people say, �Ah, that�s you�re
disease coming back, you need the medications� rather than thinking, �Well, maybe that�s
the medications that are causing that and maybe you should go slower.� People get
into this kind of catch-22 trap.>>Well that�s probably something the person
on medication also thinks.>>It can be, and that�s because they haven�t
been given the right information. And the one thing about it is that it does sometimes
take years for people to come off. A general rule of thumb is that the longer you have
been on, the longer it can take to come off. But again, there are people who go off faster
and there�s a big diversity out there. The placebo effect and expectations and individual
difference is huge, but generally speaking, people do better if they take longer if they�re
been on the medications longer. And you know, I think everybody deserves a chance to experiment
and explore and to try, and to go slowly to see if it�s right for them. A lot of people,
they get in their head that they want to go completely off. And then they start, and they
find by just reducing they feel so much better and they find that they actually do really
well on a lower dose of medication. And then it�s great, then stay at that level. It�s
always a risk-benefit analysis for you individually.>>So you�re a real believer and a real proponent
of talking about taboo topics, of not sweeping things under the rug that society might find
scary or potentially shameful, to really have a discussion. One of the things that you talk
about so openly is the fact that you still have suicidal feelings and how they shape
you. And not only would a lot of people never mention that, but they probably wonder, �Oh
my gosh, why does he do this? Why is he so open and vulnerable?� What do you hope to
achieve by sharing that part of yourself and having a discussion around that?>>Well this is really about stigma. This is
about how we overcome people�s isolation and shame and pushing things off into the
shadows. Such a big part of mental health problems is not being able to talk about them.
And one of the things that you learn if you do break that taboo and you start to ask people,
you actually find that it�s a lot more common than you would think for people to have suicidal
feelings. And for me, I�m very committed to life and I�m not going to end my life.
I�m very much someone who is not going to act on those feelings, but at the same time,
I do sometimes have very strong feelings of wanting to die. So talking about it is a way
of helping people to realize that they can live with those feelings. I think that people
have suicidal feelings and that they don�t have anywhere to go. One of the things that
happens is that people learn very quickly is that if you tell the wrong person that
you�re feeling suicidal, that person is going to overreact. They�re going to come
at you with a fear response, and that could lead you to losing your freedom. In the name
of helping you and protecting you, you could end up locked up and being in a hospital.
And maybe for some people, that is an experience of safety. But for a lot of us, that has been
an experience of more trauma and more abuse and it�s not a safe place to be. So the research is really clear that feeling
suicidal is much more common than we realize. And actually I think the key thing is to get
it out in the open so we can help each other so that we�re not isolated. I think that�s
how we prevent suicide � by actually making that connection. And there�s this idea that
people who are having suicidal feelings have given up on life. Well I don�t think that�s
true. I think someone who has given up on life goes to work, comes home, watches TV,
and doesn�t really care about much. That�s someone who has given up on life. Someone
who has suicidal feelings has a huge demand for change. Maybe they want to end the pain
that they�re in. Maybe they want to get something in their life that�s meaningful
to them that they don�t feel like they can get. Maybe there�s some situation or life
dream that they feel cut off from. And so they want a change in their life, but they
feel powerless to get it. And that�s why people have this experience of both wanting
to die and then also reaching out and telling people about it. Some people just go and end
their lives and often it�s a great mystery because they never really talked about it.
But usually people have that conflict. I know with me, it�s a wake-up call. It�s
something that says, �Hey Will, something�s got to change.� And if instead of reacting
to myself and kind of pathologizing myself and labeling myself, if I actually listen
to that part of myself with some compassion and curiosity, it has a message for me. It
says, �Hey�>>So that�s really beneficial, actually.>>It can be. You know, once you come to the
other side of it, it can be, �Hey, you need to change this.� And then I think, �Ok,
I want to change. I want it so bad that I feel like I�m going to die if I don�t
have that change. How do I get the power to at least make some steps to get on the road
to making that change?� And then it can guide you in another direction.>>You mentioned that you grew up and had some
trauma in your life, both you and your brother, probably of course the result of the trauma
that your parents faced and was passed down. How relevant do you think trauma is in people�s
mental health issues and mental illnesses? Like I said earlier, we talked about how society
has that view that there are really biological causes, but not necessarily environmental
causes or experiences like trauma. How real do you think that is?>>Most of the people I�ve talked to who
have a schizophrenia or a bipolar diagnosis � or even people with a depression diagnosis
or who are struggling with anxiety � have some trauma and they can often trace their
experiences back. I mean, I love my family. I don�t blame my family at all, but I think
we need to be honest about the fact that families often have traumatic legacies. They are often
abusive to their children or they don�t provide a supportive environment. Often the
parents are themselves survivors of trauma and that was my experience. And it wasn�t
just family trauma. I also experienced trauma with bullying in school. And so I really learned
that� For example, I had a very aggressive voice that I heard when I first went into
the hospital, and no professional ever asked me- you know � what does the voice say?
what does it sound like? is it familiar?>>Ever?>>Never ever. Which is just, you�re hearing
voices, ah that�s a symptom of psychosis and schizophrenia. And so, I… they were
interested in my family history, but they were interested in genetics. They were not
interested in trauma history. And so when I first started to say, �Hey wait a minute,
what does that voice even sound like? What is it? Does it remind me of�wait a second,
that�s a familiar�� I realized it was my father�s voice, and I traced that aggressive
voice to the trauma that I experienced and the messages, the things that my father used
to say to me. And so then it becomes a process of like any kind of bullying, except now this
is inner bullying fighting back, and standing up for myself and saying �No don�t treat
me like this, I don�t deserve to be yelled at� to this voice in my head and that was
very very helpful to me connecting it back to the story and also realizing it was a process
of standing up to that. And in terms of voices, I�ve heard many many different kinds of
voices, and the word voices — I don�t know if I like that word because it�s presences,
or it�s spirits, or it�s experiences that I have. Some of the voices I have are also
very positive and can be very helpful and when I go down into my really dark places
now, when I feel suicidal sometimes those voices will be there. When it�s really bad
they aren�t there, but they often come to me and they help me and support me. Throughout
history you know there are many many cultures where not hearing a voice is a problem because
the culture is all about the ancestors and spirits and we need to have a much more of
a diversity-based approach to these kinds of experiences I think.>>Do you think if people knew the connection
between trauma and mental illness or mental health issues in society that there would
be less stigma and more kindness?>>Absolutely. I mean I think that rather than
seeing people as something is different about you, see them as a survivor of something extreme.
They are giving, a normal and often creative response to an abnormal and extreme circumstance
that they lived though, and it creates a situation of greater compassion, and a lot of the research
has been directed towards chemistry and genetics and pharmacology and all this kind of stuff,
but t actually there is a swing back now happening now to looking at the connection between childhood
trauma and adult diagnosis of severe mental illness, and the connections are very clear.
The research does show that.>>You mentioned just a minute ago that there
are other cultures in the world where hearing voices are celebrated, and it�s not considered
a disorder, and it�s really sort of our western definition, or U.S. definition of
the disorder that�s getting us into trouble. What do you think we can do as a society to
redefine the concept of a disorder and what it means to have a disorder?>>That�s a great question. That�s why
I like this idea of mental diversity. We live in a multi-cultural society, and my view is
that the medical system — the diagnostic system, the DSM, American society, Western
science of mental illness that gets called mental illness — it claims to be scientific.
It claims to have objective truth and facts on its sides. When you look at it, actually
it doesn�t have that scientific basis. It doesn�t have that objective claim to truth.
It becomes one more cultural point of view. And so if you impose one cultural point of
view and call it scientific objectivity on a whole multi-cultural society what you�re
doing is colonialism. And so I feel like we need to have a view that says, �Look, there
are different ways of understanding these experiences.� I�m not romanticizing voice
hearing. I mean, it�s horrific and can be very very painful and extremely terrifying,
as well as sometimes being positive, but we should recognize that other cultures have
other ways of confronting that and engaging it rather than saying, �You know, you�re
different than us, we�re going to push you away and give you this mental illness label.
Actually, we�ve got a whole process for initiating someone into becoming a medicine
person. We�re going to help you understand that your destiny is to become a shaman; maybe
you�re possessed by spirits, well we understand how to deal with that. We will help you to
go through that and you�ll come out of it.� There are cultures that have actually better
recovery rates with these kinds of approaches, and again, I�m not trying to romanticize
that but we have a lot of lessons to learn and we need to not be colonialists. And one
of the things that was most important for me is my mom is mixed race American Indian
from the Choctaw Tribe, and she didn�t grow up on a reservation. She wasn�t part of
that living tradition, but it did get carried through in her ancestry. So I always learned
that there was something more, there�s something deeper, there�s something spiritual. And
so my view now is a much more spiritual perspective where when I have unusual or scary experiences
I don�t automatically pathologize myself and label myself and say, �Oh, that�s
a symptom of my disease coming back.� I have much more of an open approach, and a
much more accepting and curious stance.>>Hearing you tell your story and hearing
you speak, it seems like you are the one who did most of the work in getting yourself better.
You know, you went to outside help in hospitals or to psychiatric professionals, and in a
lot of cases made you worse, but really this process of looking in yourself and analyzing
yourself and coming to peace yourself. A lot of people I don�t think are in a space to
be that enlightened and like you said it takes time. So, what would you say to someone that
might be struggling with something like you did, but might not be as enlightened as you
are, or might not have gone down the path yet that you�ve traveled and gotten to the
point that you are?>>Well, I mean I did have a lot help from
a lot of different people. I mean like I said I�ve been though this many many year journey.
I mean what I would say to people is the peer movement. What I would say is to get access
to the stories that aren�t the mainstream stories that you hear. Learn about the diversity
of different ways of engaging with this, and start to experiment, have a trial and error
attitude. Look at things like nutrition and food allergies; look at things like sleep
patterns. Start to look at things like what are the quality of your friendships and relationships.
I really think that what we call mental illness is a combination of two things — powerlessness
and isolation — and we need to really think about how do we build relationships with people,
and this is why the peer recovery movement is so so important. I would really encourage
people to think beyond the messages that they have been getting from doctors and medical
ads on television from pharmaceutical companies, to start exploring alternative ways of understanding
these experiences and to recognize that maybe you�re sensitive. Maybe you�re creative.
Maybe you even have a gift, but you�ve learned to be so afraid of these parts of yourself
that you�re reacting and putting things in a box, and I know that�s easier said
than done, and sometimes it can take years and years, but I think there is a big lesson
from any kind of human encounter with overwhelming odds. I love to read survival stories of people
who are adrift at sea or trapped on sides of mountains. You know when I was at that
point at the Golden Gate Bridge and I was looking down, I was really thinking of ending
my life. It would have been so easy in a sense to make a step and climbing over the railing
there. When I reached that point of encountering that extreme circumstance, I discovered something
inside of myself. This is really a part of the human mystery. People encounter any kind
of survival situation, something kicks inside of you and it�s surprising. It sometimes
feels like grace, and so I think to have a certain kind of faith that you have this power
in yourself, and it�s like anything. Don�t give up, keep exploring, keep going. Don�t
settle. If it doesn�t feel right keep going. Keep doing the best that you can, and don�t
accept being isolated. Always reach out and try to get connected and the peer movement
is so important for that.>>So it often seems that once someone enters
the mental health system, they are fighting a losing battle, and in your �Harm Reduction
Guide to Coming Off Medication� you write that there is a legacy of violent and abusive
treatment towards psychiatric patients, particularly in hospitals and otherwise. You also state,
�For the mental health system, it�s one size fits all regardless of the human cost.�
That paragraph is kind of a downer.>>It is kind of a downer.>>So do you have hope that the mental health
system can ever change for the better and if so how do you see that happening?>>The reality is that it has changed. I mean
the activism and advocacy has led to tens of billions of dollars or settlements against
drug companies, for example. The states have sued the drug companies. There�s been all
kinds of investigations into the scandals. So there has been progress. When the Zyprexa
was introduced, there was an active hiding of the risks and an active law-breaking around
marketing, and that came to light. We are seeing a change where drug companies aren�t
just held up as saviors and doing just totally positive good work. They�re really seen
with a greater scrutiny now. A lot of the protection in place in the mental health system
didn�t exist until the psychiatric survivor movement came along in the 70s and 80s as
a part of the wave of the civil rights movement and the women�s movement to really challenge
it. So we�ve seen a lot of changes in our society, but at the same time, there are all
these different forces that are driving the other direction. I mean people are having
to work so hard with so much pressure on us, there so little community, there’s so little
of that natural social connection that really helps us and supports us. A lot of people
are turning to the magic bullet, the pill, the solution in getting a prescription and
that�s becoming part of the mentality of our culture and so what I see really is a
liberation movement. People who don�t have a voice or haven�t been given a voice, who
have been actively suppressed with their voice finally coming out of the shadows and starting
to challenge, and to take back some power, and although I think that we have a long way
to go, and I think that unfortunately a lot of the practices in the United States are
being exported around the world, there have been real changes. And one of the things that�s
new on the scene is the peer recovery movement, and more and more of the mental health agencies
around the country and the state mental health departments are adopting a recovery perspective.
They�re bringing peers into the workforce in terms of providing services. And I have
to say that when I first started doing this work around coming off medications, the reaction
was, �Oh, you�re pushing anti-medication, you must be a scientologist, you have this
agenda,� rather than saying, �Look, this is information that is missing that we need
to provide to people. You�re not providing the information so we�re doing it ourselves.�
So when we first came out with that we were just shut out, and now we�re being invited
to conferences, there are trainings. I was just in Vermont with the Vermont Department
of Mental Health doing trainings on coming of medications. So I see a real sea change.
I think we need to keep pushing and so the issues around hearing voices and the importance
of addressing suicidal feelings without that fear-based response that says we automatically
need to force people into the hospitals. We still have a long way to go, but I think we
can keep bringing this to us, and I think we will ultimately are going to win because
this does affect everyone. All of us can benefit from a more open and compassionate and heartful
response to mental health problems.>>Well Will, thank you so much for joining
me today. I really enjoyed out conversation and best of luck in your continued work.>>Shannon, I really appreciate you having
me on the show. Thank you.>>Thank you.>>To access Will�s �Harm Reduction Guide
for Coming Off Psychiatric Drugs,� visit: willhall.net/comingoffmeds. To listen to �Madness
Radio,� the show hosted and produced by Will, visit www.madnessradio.net or iTunes.
To learn more about The Freedom Center, a support and activism community run by and
for people labeled with severe mental disorders, visit http://freedom-center.org. Thank you so much for watching. We�ll see
you next time.

4 Comments

  1. Kristian Muus
    Kristian Muus May 9, 2017

    Good job will 🙂 Well done. But i disagree with suicidal thought being rather normal or more common than we think. I used to have skizophrenia and i only had suicidal thought in my teens and during a to fast taper of my antipsychotics. In my adult life i never have suicidal thought, sure i get sad sometimes. But never suicidal. Take care and have a great day all who watch this clip.

  2. Kevin Davis
    Kevin Davis July 30, 2018

    I was in the hospital at western state in virginia I started doing well with out meds but the doctor told you can not get out the hospital unless you take meds,. I was talking do staff one said do not talk to us go talk to your peers. Another said they act like spoongebob you act like what is the none crazy one. you need to be like them. well the next thing I know the gave me pills to make me smell like wet dog for two weeks. Any they told me they would beat me up the hire of patients to threating gave privilges to some. any I wanted to come off the pills in hospital ,. if you stand up against big pharma any thing could happen., I have had metal break downs but do not need the pills., the pills never makes me better. at western state I started getting better with out pills

  3. Eve Northrop
    Eve Northrop April 25, 2019

    the medicine is often the illness. tut

  4. anacionqtfixo
    anacionqtfixo May 7, 2019

    I appreciate the subtitles;

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