When my sister-in-law Joanne was diagnosed with cancer, my wife, Patti, immediately began searching the Internet for information and one of the most useful websites that she found was a blog being written by a woman undergoing cancer treatment. Patti became a faithful reader and found this woman’s writings helpful and inspiring. Up until Joanne’s death last year, Patti felt that she, Joanne, and the blogger were in the same foxhole.
No one thinks it’s odd to ask for direction from someone who has gone through a life-altering illness — except when it comes to mental disorders. Too often, persons with mental illnesses are ignored even after they have recovered from all symptoms of their illnesses. Part of the reason for this is stigma and the deeply held belief that persons who are “mentally ill” can’t be trusted to take charge of their own lives. 
Let me be clear here because this is an emotional subject, especially among parents, of which, I am one. When Mike became psychotic, I did not listen to his ranting. I stepped-in and did what I believed any decent human being would do when someone they love becomes so obviously mentally unstable that they need an intervention.
But I’m embarrassed to write that even after Mike got his illness under control, I often treated him as I had when he was psychotic. It was difficult for me to step back, even though he was symptom free, and realize that if all of us wanted to move forward, he was going to have to take charge of his own life.
I’m proud to say that last year, Mike became a peer-to-peer specialist. I wish that he had done this at my bidding, but it was at the suggestion of his case manager, a fabulous social worker. I didn’t know much about peer-to-peer specialists and I was skeptical. Journalists always are. But as Mike was going through the training, I began to realize the obvious. No matter how much I love him, I will never fully understand what he felt and experienced because of his mental illness — only someone who has walked in his shoes will be able to do that.
I have become a proponent of peer-to-peer. It’s the same concept that many drug and alcohol treatment programs use. It makes sense. And it is important for all of us to listen to persons with mental illness who are in recovery and include them in our efforts to reform our mental health system. That may sound like a “Duh” statement but I am constantly surprised by the number of requests that I get to appear on public panels, only to arrive and discover that there are doctors, academics, parents, and other officials, but no one is on the panel who has actually had a mental illness. That is why I put in my contract that I will not participate in a panel unless there is at least one “consumer” on it too.
This week, Mike was asked to speak to county officials about peer-to-peer specialists and he shared his remarks with me. When I asked, he said I could share them with you.
When I think about my role as a recovery specialist, I must not lose sight of the fact that I too am in recovery, just as my consumers are. Just because I work a position 40 hours a week and have county credentials and business cards, doesn’t mean that I do not go home and live with the hard reality of mental illness. I don’t stop having the illness when I go to work, I live it 24-7. Even though it has been over two years since my last relapse, I still struggle with the possibility of relapse, and have to adhere to my treatment plan and recovery oriented activities and it is a battle I face every day, being an advocate for myself. When I am instilling in others the need to become their own advocates, I remember this.
I think one of the most important things a person who is undergoing recovery can have, are the very things that I want when I am in crisis, so when I am with a consumer, I try to treat them by the same principles and standards I myself would appreciate. These things include having someone to stand by the consumer, to listen to them, to commune with them, and make them feel comfortable with their condition, even when society may not understand or care about their recovery. By having a vested interest in their well-being and showing that I care about them, I am able to build a bridge to consumers. Once that bridge is built, it is easier for my co-workers to administer services.
I have seen eyes light up when I explain my role as a recovery specialist, and when I explain that I too have a mental illness. There is a bond that forms that only someone who has been through the ups-and-downs and first-hand experiences of an illness can relate too. When you’ve felt doubt about your place in the world, or experienced embarrassment when your condition was discovered by a less than understanding individual, when you’ve faced harsh stigma, or not known when to trust your own mind, it can be hard to relate to some of the recovery oriented lessons that others might try to help you with, but when it comes from someone who has walked down the same path, the words resonate much more. Defensive barriers that consumers may hide behind begin to become transparent and are shed when a recovering consumer feels comfortable enough to be themselves after I share my own journey and triumphs.
As people living with mental illness, we see the world through a different, unique perspective, and the goal I have as a recovery specialist is to convey that the consumer is not alone. As a part of the jail diversion team, we work as a group to remind the consumer that recovery is possible, I stand as a testament to that, and also we commune with the consumer because the burden to navigate one’s illness is very hard to do alone. Just something as simple as having a person to talk to, even if it is a discussion that has nothing to do with mental illness, to relate to, even if it is an activity that is mundane, to exchange experiences with and bounce ideas off of can make one’s journey to recovery much more pleasant and less stressful. I would not be here today if it were not for the love and concern of others, of dedicated individuals and family members who could see my potential when I couldn’t see it and who could help me help myself when it wasn’t possible to do so myself. By working as a recovery specialist, I am able to help see that potential in others now, and remind them that recovery is possible, both by example and by encouragement.
I couldn’t be prouder of my son.
(If you found this blog interesting, share it with a friend, doctors, loved ones, or with your own recovery support group. Spread the word that persons with mental disorders can recover and that peer to peer programs can be an important tool in helping others get better.)
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You certainly have every reason to be proud of your son and he is most likely very proud of you also for being there during a time in his life when your involvement was crucial to keep him safe because he was unable then to recognize that he needed treatment. Given our current lack of involvement from mental health service providers for individuals who are not well enough to ask for treatment, family intervention is often the only support available. However, when sensible assisted outpatient treatment laws are in effect, then some of the responsibility is placed on the designated mental health provider, which benefits individuals who are unable to ask for help on their own, often because they also have anosognosia (lack of insight) which occurs in about half of individuals with a severe mental illness.
During the time of you son's illness when he needed a strong, involved father because he was unable to help himself and the needed treatment wasn't available because he didn't meet the level of dangerousness required by law, you were there. And, now that he is in the period of his life where he is able to help himself (and others as well), you've stepped back. Sounds like a reason for both of you to be very proud!
I have just finished training as a Certified Peer Specialist for the State of Florida and after many years of bouncing in and out of the system simply because I didn't know what was available to me, I became aware of this possibility. In a short period of time my life has completely turned around and I am living again, I have always had a supportive husband who loves me very much but was unclear on how to help me.
I know that it takes seeing and hearing how another Peer has moved forward into Recovery that has made all the difference for me, given me the hope and helped brought out my belief in myself again.
I appreciate our loved ones that continue to walk with us as go forward!
This is truly an inspiring reflection of the valuable work that peers do in our mental healtlh system. Peers should be required to assist in every treatment team meeting to help those who have not traveled as far inthier journey of recovery. As a mental heatlh professional, I often wonder how far we have really come, and then I am re-energized by stories such as this. Thank you for sharing – I am going to share this with others where I work.
The best advice I received from a peer was to take control of my own health and educate myself in the underlying causes of symptoms of mental illness.
Psychosis is defined in the DSM-IV as either Substance-Induced Psychosis or Psychosis from a General Medical Condition. NOS (Not Otherwise Specified) means you need to see a different doctor who can specify the cause.
Mania, Psychosis, Delusional thinking, visual/audio halucinations are just descriptive labels. An individual with those symptoms should not be dx with Bipolar Disorder or Schizophrenia. They should be tested for and treated for underlying medical conditions.
The psychiatric labels of Bipolar Disorder and Schizophrenia are overused and unsubstantiated.
Dr. Abram Hoffer and Dr. Linus Pauling are two individuals who were on the right track for solving mental health problems through the use of an Orthomolecular Approach.
Fish Oils are so important to the brain. They should be the first course of action for anyone with symptoms of mental illness.
Expert Opin Investig Drugs. 2007 Oct;16(10):1627-38.
Omega-3 fatty acid eicosapentaenoic acid. A new treatment for psychiatric and neurodegenerative diseases: a review of clinical investigations.
Song C, Zhao S.
University of Prince Edward Island, Department of Biomedical Sciences, AVC, 550 University Avenue, Charlottetown, PE, Canada. cai.song@nrc.gc.ca
Abstract
Decreased n-3 fatty acid levels have been reported in patients with depression, schizophrenia or Alzheimer's disease. Recently, eicosapentaenoic acid (EPA) has been used to treat several psychiatric and neurodegenerative diseases due to its anti-inflammatory and neuroprotective effects. A total of six out of seven clinical trials have shown that EPA significantly improved depressive symptoms when compared with the placebo-treated populations. Several investigations have also reported that EPA could effectively treat schizophrenia. A case report and a clinical trial have shown that EPA was beneficial for the management of most symptoms of Huntington's disease, while a more extensive clinical investigation has demonstrated that EPA could only improve motor functions. Further clinical studies are required to fully explore the effects of EPA on other neurodegenerative diseases. The limitations of previous studies and further research directions have also been discussed.
PMID: 17922626 [PubMed – indexed for MEDLINE]
The best advice I received from a peer was to take control of my own health and educate myself in the underlying causes of symptoms of mental illness.
Psychosis is defined in the DSM-IV as either Substance-Induced Psychosis or Psychosis from a General Medical Condition. NOS (Not Otherwise Specified) means you need to see a different doctor who can specify the cause.
Mania, Psychosis, Delusional thinking, visual/audio halucinations are just descriptive labels. An individual with those symptoms should not be dx with Bipolar Disorder or Schizophrenia. They should be tested for and treated for underlying medical conditions.
The psychiatric labels of Bipolar Disorder and Schizophrenia are overused and unsubstantiated.
Dr. Abram Hoffer and Dr. Linus Pauling are two individuals who were on the right track for solving mental health problems through the use of an Orthomolecular Approach.
Fish Oils are so important to the brain. They should be the first course of action for anyone with symptoms of mental illness.
Expert Opin Investig Drugs. 2007 Oct;16(10):1627-38.
Omega-3 fatty acid eicosapentaenoic acid. A new treatment for psychiatric and neurodegenerative diseases: a review of clinical investigations.
Song C, Zhao S.
University of Prince Edward Island, Department of Biomedical Sciences, AVC, 550 University Avenue, Charlottetown, PE, Canada. cai.song@nrc.gc.ca
Abstract
Decreased n-3 fatty acid levels have been reported in patients with depression, schizophrenia or Alzheimer's disease. Recently, eicosapentaenoic acid (EPA) has been used to treat several psychiatric and neurodegenerative diseases due to its anti-inflammatory and neuroprotective effects. A total of six out of seven clinical trials have shown that EPA significantly improved depressive symptoms when compared with the placebo-treated populations. Several investigations have also reported that EPA could effectively treat schizophrenia. A case report and a clinical trial have shown that EPA was beneficial for the management of most symptoms of Huntington's disease, while a more extensive clinical investigation has demonstrated that EPA could only improve motor functions. Further clinical studies are required to fully explore the effects of EPA on other neurodegenerative diseases. The limitations of previous studies and further research directions have also been discussed.
PMID: 17922626 [PubMed – indexed for MEDLINE]
What I really wish is that there were Anonymous groups for those of us who are diagnosed and functional. Statistically, that’s most of us. And the Peer-to-Peer groups that help you figure out how to deal with Voc Rehab and SSDI, even our local DBSA, etc, are all oriented to folks who can let their condition be known (or can’t help letting their condition be known) and aren’t in a position where they’d be fired/ sidelined/ demoted due to stigma. I’m really tired of living in the closet, but I’m not ready to lose my career in the hope of busting stigma for someone else’s future.