I got the following email from Rick Cagan, the director of NAMI KS. Rick is actually a very receptive guy for the recovery movement and has started learning about promoting recovery and using psychiatric survivors to guide program design. This year he (and the entire KS recovery movement) won a Unity Award at the Recovery Conference for passing Amendent 2, which took two words out of the Kansas constitution that would have allowed officials to deny the right to vote to people with mental illness. We used an approach that made it applicable to everyone, “Don’t lose YOUR right to vote….” and managed to overcome the traditional fear and avoidance of anything to do with mental health.
So now Rick says, “Tell NAMI about your first experience with psychosis.” This is probably an email from National NAMI. National NAMI has taken a lot of pharma funding in the past and has been a big promoter of genetic mental health for a long time. They are a favorite knocking target for many people in the recovery movement even though DBSA and Mental Health America take about the same proportion of pharma funding on their national levels. However, if we believe in recovery as individuals, that we ourselves can change, we also have to believe that national organzations can change and learn. Here is one way that we can help guide them further towards understanding the recovery movement. And Ken Braiterman, the chairman of my board, says, “All NAMI branches are totally different. You’ve seen one branch, you’ve seen one branch, that’s all you can say.”
NAMI believes there is an unmet need for information and resources for people experiencing first episodes of psychosis. We want to learn from you to better inform the development of appropriate resources and supports for individuals and families experiencing their first episode.
If you are an individual or know someone who has experienced an early episode of psychosis, we encourage you to share your experience by completing the appropriate 20-minute survey:
– Family or friend who has had direct contact with an individual in an early episode of psychosis
– Familia o un amigo que ha tenido contacto directo con un individuo en los primeros episodios de psicosis
So here’s our chance to talk about the idea that is it better to use human experience language, that diagnosing people may sometimes increase stigma and disability, and that medications may not always be nearly so effective as we’ve been told. I have created a Facebook discussion group called UnDiagnosing Emotional Distress where we can process some of this research. You can also follow us on Twitter at: @UnDiagnosing.
In this group we also develop some advocacy strategies to look at other causes of emotional distress besides our genetics. For instance, bullying, tauma, grief, spiritual disconnection, lack of job fit, unhappy marriage, giving up on one’s goals, or lack of social connection can all also cause what has been called, “mental illness.” These are all temporary conditions with much different treatments, judgements, and prognosis than the genetic model of emotional distress. Tell NAMI about your experience entering the mental health system and what you think should have happened differently.
Like I say in my Disability Industrial Complex Poem, “Don’t give me a permanent label for my temporary problems. Tell me truth abut my emotions, and hold me in your sanity until the morning breaks.”
Here’s are selected questions from what I told NAMI.
1. Who was most helpful to you regarding your first experiences with psychosis?
My counselor. I really didn’t have anyone else at all to talk to at the time because I was too caught up in my socially isolated husband’s lifestyle. I really think that one of my biggest problems was lack of any meaningful relationships. The fact that my counselor was the only person I could talk to was probably, in reality, one of the biggest contributors to my initial emotional distress.
I think this person got me a psychiatric diagnosis that I didn’t need to have. I think giving people meds and early labels worsens the problem. Please read Robert Whitaker’s Anatomy of An Epidemic. Medications help some people but have no evidence base. Medications hurt many others and may be why disability is on the increase in the United States. There is no evidence base for a chemical imbalance, and NAMI’s long time advocacy to insist there is one despite a complete lack of scientific evidence is quite harmful to people with emotional difficulties. It completely ignores that our problems may come from trauma, a bad job situation (me), lack of social connection (me), a disconnect with our spiritual tradition (me), drug use (me), or any number of other causes. None of these other causes are permanent like the genetic and biochemical model. Using the medical model instead of looking at people’s situations make mental illness seem much more hopeless and permanent and actually increases stigma.
Yes, some people do much better off meds and telling people that everyone needs meds is a disservice to many people’s complete recovery.
2. What did this person do to help you?
Showed me that someone cared. Ignored all the key problems in my life and just focused on medical symptoms. Actually, this counselor was a really good person but the standard of care back then (and now still) was just to get people into the labels and meds as soon as possible. Instead, we should address all of the other contributing factors first and only give mental health labels as a last resort, if even ever at all.
3. Which of the following best describes your initial insight into your experience with early onset psychosis?
I actually wasn’t really psychotic at first even though I got put on antipsychotics. I was having a few visual disturbances but my doctor really freaked out. Please he gave me the completely unsupported line about antipsychotics being effective in augmenting antidepressants.
Really, using medical terms like psychosis makes a human experience of hearing voices much more scary than it needs to be. Hearing voices is a very common thing in many cultures and calling it a sickness just makes it worse. Getting a little separated from reality can be scary, but if you get told it’s forever and it means you’re extremely ill, that makes it a lot worse. It’s a feedback loop that people can get caught in – the more they are scared of their own mind, the more the mind will produce scary images and voices. But it’s easy enough to break this loop. Just be accepting the situation as an indicator for a temporary increase in self-care needs, not a permanent sign of genetic deficit.
4. What information or resources were the most helpful to you around the time of your initial awareness of your condition?
I didn’t get any good information on mental illness initially. It wasn’t until I found the consumer movement that I realized that people actually did recover all the way, even the majority of people. I got through many initial crises by calling a warmline and learning that other people had survived suicidal thoughts before. Then I started finding good research about the ineffectiveness of medications for many people (not everyone), how to get off medications and how to find good support groups that weren’t just illness and sob stories. I started leading a support group and learning more about supporting myself through difficulty. I started working with the help of voc rehab and building a new career. I became a mental health advocate and learning how to work with people, encourage other people, and help other people not get freaked out by their symptoms. Helping others helps ourselves, and thus peer support is the most effective medicine of all. I learned that diagnosis might be the most disabling aspect of all. I learned that symptoms and distressing and not dangerous and just how my brain indicates to me that I’m feeling stressed. I learned how many of my problems are actually coming from my trauma background. I don’t think I had a mental illness at all, just trauma issues that caused most of my symptoms.
I also learned to build community, starting with a local frisbee golf community where I only had to tell them as much mental health info as I wanted. Everyone accepted me there, then I joined a cycling community, a church community, poetry, and arts communities. When I became a mental heath advocate, that was one more group of people that accepted me. Many people are extremely isolated, and that causes more illness than anything.
I learned to take care of my body. I learned how important diet and exercise were for me and I found a way to work out every single day, at least once a day. I realized I needed protein at every meal and learned to eat lean protein and that I couldn’t handle being a vegetarian. I mostly quit smoking and quit using pot and learned how to moderate drinking.
I went from six meds to zero and learned that problems coming off meds are mostly due to medication withdrawal and not a return of symptoms. It’s easy enough to tell the difference – med withdrawal comes on right away and gets better with time. But return of symptoms comes on gradually and gets worse with time. So many doctors know how to put people on meds, but very few of them know how to get people off them. But more and more scientific evidence is showing that people who take less meds or never get on meds have a greater chance of recovery. NAMI needs very badly to know all of this information.
Now I try to help other people avoid entering the mental health system and to learn to support themselves through difficulty so they can make a complete exit of the mental health system. I am running an underground railroad to help people escape the disability industrial complex. I think that the entire mental health system should be run by peers and medications should only be given for a short term and people should be helped to get back off meds as soon as possible.
Telling people that they have a brain imbalance and will need to take meds for the rest of their lives just increases stigma, destroys hope, and isn’t even scientifically true. Stop oppressing us and start telling the truth: people completely recover, people build totally new lives. Those of us in recovery who fight for our brothers and sisters who are still in chains are some of the most powerful forces for mental health treatment out there.
6. What was the most challenging to you around the time of your initial awareness of your condition?
The most challenging part for me was my label, and moving beyond my label. I thought that I would be sick for life and my ability to contribute was over. Like I say in my Cloudscapes poem,
“Through the fire I walked, through the valley where everything was evil.
My hopes destroyed, my destiny empty, my dreams deferred forever.
I beleived I had no power to choose a challenge, to contribute to the creation on this planet.
So in that place I at the dust, logic of the doom descending as I chose to end my place upon this earth….”
Here’s a poem about another challenging time, where I decided that “You’re Only Flavor is Vanilla if You don’t Have a Mental Illness.” I talk about how pychosis feels and some of the benefits and complete rapture in the experience.
I didn’t think I would make it to my 30th birthday, and took many steps to make that happen. I had to learn how to build a new life. The most challenging thing for me was being told that my brain was faulty, that only the meds could cure me, even though they didn’t seem to be helping.
I kept thinking that someone would fix me, and neither the mental health system or lots of alternative medicine could fix me. The single most important moment in my recovery came the day I realized that I would have to take responsibility for fixing myself.
Viewing emotional distress as a medical illness instead of signal for life change is very demoralizing and also prevents people from making the necessary changes in their lives. I had to find a new spouse, new communities to join, new friends, new passions and causes, a new diet, and a new career. Then I had to find what made me strong, what gave me power, and what I could use to support myself through difficulty. Friends, bicycling, and poetry are the three most important things for me. A “diagnosis” helped me find none of those things, only support from people who had been through similar experiences.
During my very first experience with psychosis, I wasn’t that sick. I was working full time and going to school full time and doing pretty well with my home life. It was until I internalized my diagnosis and lost hope in my ability to work things out that I really crashed and burned. So my deepest, darkest pit that I ended up in came directly because I didn’t know about recovery and no one was telling me how likely and how possible it really was. No one told me that my suffering was only temporary and that I could do many things to make it completely go away. None of my care providers told me that tons of tons of people completely got off meds and exited the mental health system never to come back. Once I learned that it was actually quite possible to completely take control of one’s life again, I made it my goal. It’s so hard to work for something when you don’t even know it’s possible. I know spreading the myth of the lifelong illness is very profitable for NAMI, but please start telling the truth about complete recovery, not just kind of partial coping and still suffering recovery.
7. What do you recall was your most immediate need around the time of your first experiences of psychosis?
I needed sleep, and someone to talk to who had been there before. Both would have been completely provided with a peer respite center. These are peer run hospitals that cost 1/10 as much as traditional hospitals but have better recovery outcomes. Most of this is because people who have been through their own crisis are much more understanding and accept people where they are instead of trying to medicate the crisis away or to make the person conform immediately to social norms.
I think the one thing that makes the consumer movement unique is that my peers have a very high tolerance for odd behaviors that don’t actually harm anyone.
8. Did substance use impact use around the time of your first diagnosis with psychosis?
I was smoking pot at the time and that probably made my symptoms quite a lot worse. I think that none of my treatment providers really discussed that with me. It’s only now much later in my recovery that I have been able to fully appreciate how much worse I feel after using pot and how much it might have been impacting me back then.
9. Do you have any helpful suggestions for people who are having new experiences with psychosis now? You may include suggestions for resources that you may not have had during your first experiences with psychosis but wish you had.
Also see my post on “My mental health activist lessons for the general public.”
Don’t be scared of your own mind.
- If you are not on psych meds, don’t start taking them.
- If you are on psych meds and think they’re not helping you, get off them very slowly and carefully and working with a good solid team of people that know how to do this. This process may take several years.
- Learn about how your own trauma experiences affect you and how you can self-soothe when those issues come up.
- Know that total and complete recovery is possible. People successfully exit the mental health system every day.
- Know that most diagnoses and labels have no scientific basis at all and instead are very political and depend on your relationship with doctor and your insurance coverage.
- Know that many advocacy groups, much of scientific research, and many doctors and mental health systems have been strongly influenced by pharmaceutical funding and you have to do your own research about what is true
- You have to stand up to your doctor.
- Get away from anyone who does not believe in recovery. This may include your family.
- Know that you need to find tools to self-support through difficulties.
- Build a strong community of people who know about mental health issue and have been through it.
- Build a second and different strong community of people who don’t care one bit about mental health and you never have to talk about it with them.
10. Would information on any of the following topics have been helpful to you around the time of your first experiences with psychosis?
Tell people about recovery and peer support and stop using medical model language which has no scientific basis at all.
11. Is there anything you would like to add regarding your first experiences with psychosis?
I should never have been sucked into the mental health system. Almost no one should have, as is shown by the Open Dialogue model in Finland, where they have almost eradicated schizophrenia and emptied the mental health system. They have an 85% Recovery rate. Here’s a video about their program.
We, too, in the United States, can eradicate schizophrenia simply by handling people with more compassion and peer support and less medications and labeling and diagnosing. No one should end up disabled for life because of a temporary break from reality. Help people to figure out why the break happened and move on with their lives without giving meds that permanently increase people’s succeptiblity to futher breaks from reality.
Give us a chance to live our complete lives. We want to contribute fully to society, and add our immense creativity and compassion and sensitivity to the world. Don’t be scared of any deviations from normal. You will be rewarded richly for including us fully in the entire planet.
Don’t give me a permanent label for my temporary problems. Give me truth about my emotions, and hold me in your sanity until the morning breaks.