And the word I wish we would use insteadMy heart hurts today. My friend Laura Pogliano has lost her 22-year old son Zac, who had paranoid schizophrenia. Both Laura and Zac were tireless and passionate advocates for ending the stigma of mental illness. Their story was featured in USA Today's "Cost of Not Caring" series, where Laura described herself as a "fortunate" mother--fortunate because despite personal bankruptcy, she had been able to obtain treatment that seemed to be working for her son. This tragic turn reminds all of us mothers just how fragile life is for our children who have serious mental illness. As a parent of a child with bipolar disorder, my worst nightmare is what happened to Laura and her son.
There's a popular quote floating around mental health advocacy circles: "Mental illness is not a choice. But recovery is." I know people will disagree with me, but today, I'm tired of that sentiment, and I wish we would retire the word "recovery." When local and national mental health policy is shaped by high-functioning consumers who have been able to manage their illnesses rather than by the sickest patients and their families, it's the equivalent of only allowing stage 1 cancer survivors to drive the narrative and take most of the funds. While their courage is admirable and their struggles are genuine, too often, we lose sight of those who are suffering the most. They become invisible to us, marginalized on the streets or in prison. Or they die young, like Zac.
I wish we would stop talking about recovery and replace it with a more useful, less stigmatizing word: hope.
Here are five reasons I wish we would stop using the word "recovery" for serious mental illness.
- Not everyone recovers. The word "recovery" has become central to mental healthcare, from the top down. In fact, the Substance Abuse and Mental Health Services Administration's stated mission is that "People recover." With serious mental illness, that's not true. People recover from head colds. They recover from chicken pox. They recover from situational depression. They even recover from trauma. But some diseases are lifelong. Like diabetes, or Parkinson's disease, or multiple sclerosis, serious mental illness is a lifelong, chronic health condition.
- Recovery and its partner phrase, behavioral health, imply that mental illness is a choice. Mental illness is not a choice or a character flaw. The focus on "behavioral health" unintentionally stigmatizes the very people that SAMHSA is meant to help: those with serious mental illness.
- The word "recovery" suggests that people need to return to a "normal" state, rather than embrace their differences. What does a person with bipolar disorder or autism need to "recover" from? When people realize they are not their diagnoses, they can start to find things that actually work to help them live successful and productive lives. That's hope, not recovery.
- The concept of recovery increases stigma, both within and outside the mental health community. Again, if people recover, why aren't you recovering? It must be a choice you are making, or something you're doing wrong. Some people tell you the medications you take are preventing you from recovery. Others tell you that your choice to stop medication is preventing you from recovery. Who is right? Hope is a universal concept that embraces a wide range of possibilities. Recovery seems dependent on a prescribed set of treatments that may not work for everyone.
- Recovery is an unrealistic standard for any chronic illness, including mental illness. We would never apply the blanket expectation of recovery to any other chronic illness or disability. With cancer and autoimmune disorders, we use the term "remission" to describe a life-threatening systemic illness that with luck and treatment has been stopped in its tracks. With other chronic illnesses like diabetes, we talk about managing the illness. But with mental illness, we expect people to "choose" recovery, even when they are experiencing psychosis, or when their disease steals their ability to make rational choices.
Behavioral health is an important concept for everyone. We should all focus on our behavioral health: on diet, exercise, mindfulness, good sleep habits. But behavioral health is not mental illness. Mental illness is physical illness. For people with serious mental illness, behavioral health alone will not "fix" or "cure" the chronic condition, and for us to expect otherwise is unrealistic and cruel. We need to focus on effective treatments, not inaccurate judgments about what we "believe" or "feel" mental illness is. It's a very real health challenge, with real and sometimes devastating consequences for those who live with it and their families.
Let's keep talking about behavioral health for everyone. But let's stop talking about recovery for serious mental illness and start celebrating people whose brain disorders cause them to live with health challenges comparable to those experienced by cancer patients. The word we need, in the face of so much loss, is hope. Mental illness is not a choice. But hope is. Even in the face of tragedy, today I choose hope.
23 comments:
Agreed. I am writing on this. It is another of those bad ideas that comes from SAMHSA
Agreed. Recovery is an AA term. "Behavioral Health" makes me stabby. My son is relatively stable right now. But he's far from "in recovery."
I am a. Bipolar was diagnosed at 22 I'm 46 now I have not been medicated in over 10 yrs I have no health insurance I work but its a cashier job I have been OK without meds I guess u can say I haven't had any episodes in a few yrs
An to call it a recovery no u never recover mental illness its not an addiction . those who think u will recover dnt deal with there own mental illnesses .its just ignorance
Yes. Yes, exactly. I usually advocate in Carter's name, but I have SMI too. I have major depression, the worst most crippling kind, which has caused me to require multiple hospitalizations. I was so sick, I got SSI on the very first try back in the mid 2000s (I no longer qualify based on income or health status, thank you and amen). I am extremely fortunate that after many years of hard work and the vast improvement in available drugs, I'm a functional adult. Not, probably, as functional as I would be had I never had the disease, but functional. I'm not recovered. I have this disease and it doesn't go away. I must tend my health with a mindfulness and care that borders on rigidity (and "rigid" is opposite my nature), but I want wellness. But that's a choice I can make TODAY, right now, from a place of significant stability. It wasn't a choice I could have made in 1989, or 1998, or 2003. In the grip of the disease, many choices are meaningless or impossible. I am flattened by Zac's death. I feel just...wordless and despairing.
Oh, and the phrase "behavioral health" can take a long walk off the proverbial short pier, thank you very much.
So true! In the U. S. we're used to fixing things. I get a headache I take a pill, it goes away. I have diabetes. I watch what I eat and take my insulin and I go on about my life.
But serious mental illness is different.
Only between 25% and 35% of people with serious mental illness "recover," with the medications and therapies currently available. And no amount of trying hard or thinking good thoughts is going to do the trick. We need money spent on causes and on improved treatment therapies for these seriously ill people, like Zac, my brother Paul, and all out loved ones out there.
Clinical recovery and personal recovery ("Who Believes Most in Me and in My Recovery" in Journal of Social Work in Disability & Rehabilitation) are both equally important. A "seriously mentally ill" person may not clinically recover, but personal recovery is within their reach.
The ability to direct your own health care is a human right. Clinicians and family members of people who live with disabilities do not "own" medicine. Families and clinicians can betray us at a moment's notice. The psychiatric consumers and survivors are the only people who are guaranteed to have a direct and permanent investment in mental health care that doesn't violate our rights. Without them, the clinicians and family members are SOL.
In a few weeks, the autopsy of Zac Pogliano will be made public. I wonder what all the pro-force psychiatry activists are going to say if it proves that this young man was poisoned to death by the psychiatric drugs that his mother and clinicians told him to take.
As a psychotherapist living with Bipolar Disorder and a family member of loved ones with serious mental illness, I agree with you Liza. I am one of the "high functioning" ones, though I wasn't always so. I spent more than a decade spinning in and out of hospitals, tried every treatment available at the time, even lived at the National Institute of Mental Health for six months participating in a double-blind, placebo-controlled treatment study. I was fortunate to have a wonderfully supportive and knowledgeable family and a great psychiatrist who finally found a cocktail of medications that helped me to stabilize. I work daily to balance my career, family and pay attention to appropriate self-care so that I continue to function well. I will not ever "recover" completely from having a brain illness like Bipolar Disorder. I can't just get over it and call it done. I continue to advocate for people who struggle immensely with just staying alive for the day. I am not a part of "recovery" movement that believes people who are floridly psychotic should be the director of their health, just as I don't believe that a person with serious Alzheimer's Disease should be allowed to make life-or-death health care decisions by themselves. I am hugely appreciative of all the people who stepped in and helped me when I couldn't help myself. I am hopeful of my future, but I don't have a choice if mental illness is a part of it.
Excellent article, very thought provoking. I am a sibling, and I have been an advocate for over 30 years. My brother (54)isn't recovering anytime soon so what is the next option? I like wellness as was suggested. I am just hoping he will get to a place where he has more happiness within each day. I am glad for the consumer involvement within advocacy because I think we can all learn from each other. When we all get to the table we work out the details. It is being done, though not fast enough.
Also, as regards 'behavioral' as a term that offends. I have liked it because I looked at it as stating that these are illnesses for which we do not have a blood test, but rather only a careful observation of behaviors.
Dear A.,
First of all, Zac was not on involuntary treatment. Ever. Second, do you realize how cruel and distasteful it is for you to make assumptions like that about his death in light of how tragic this is? Take your agenda elsewhere. Very inappropriate.
Deborah, my exact words were "mental health care that doesn't violate our rights". Sometimes that means being hauled into court and ordered to take drugs. It can also mean that your parents threaten to kick you to the curb if you don't take your medication. Or it can mean being lied to by your doctor about the side-effects of shock treatment. There are countless ways for the mental health system to screw consumers over.
I'm making no assumptions about the cause of Zac Pogliano's death. Again, my exact words were "I wonder what all the pro-force psychiatry activists are going to say IF it proves that this young man was poisoned to death by the psychiatric drugs that his mother and clinicians told him to take."
As for "taking my agenda elsewhere", why the heck should I? This blog is supposed to be about destigmatizing mental health issues and people who live with mental illnesses. Segregation prevents those goals from being achieved. Besides, I can voice my opinions with or without this blog.
I completely agree that the word "hope" should replace "recovery." When someone who doesn't have mental illnesses sees the word "recovery" in the quote, they think that all of these mental illnesses can be treated. I never saw a doctor for my mental health until I was 19 and one of the illnesses I have is bipolar and no medication works 100% for me. People at work don't take any of my health problems seriously and make fun of me, one reason being that a lot of the time I looked depressed, I have had a few emotional break down type things, and because I look angry. It isn't fair.
Thanks for the thoughtful post, Liza. I have been heartbroken since word of Zac's passing, too, and I think you make some excellent points.
I couldn't agree more about the term 'Behavioral Health' being confusing to the point of damaging. 'Recovery,' however, is potentially more complex. For what it's worth, here is some additional food for thought from an eternal optimist:
The term recovery from serious mental illness (SMI) does in fact imply something different than it does when applied to the common cold, and therefore without a doubt, is surely confusing to the general public. The term came from the consumer movement -- from people like Elyn Saks and Pat Deegan and others who forged the way for many who live rewarding lives with SMI. It, in many ways, was an effort to insert a huge shot of hope in what was (and largely still is) a scary and bleak message following a diagnosis about the potential to live a "normal" life (whatever that means). ;)
You might be curious to learn more about the term 'recovery,' its origin, and scientific and social implications in Dr. Lisa Dixon's lecture, "The Science of Recovery." http://grandrounds.psych.med.nyu.edu/grandrounds/archive&vid=893365&gnr=824342
I know many people who live this definition of recovery. They are my beacons of hope every day, as I am also a sister to a brother who has NOT experienced recovery from schizophrenia for the past 16 years, and I know plenty of family members just like me, including Dr. Lisa Dixon herself, whose own brother lives a life much like mine.
Despite my brother's experience, I don't believe I should rob those who DO live in recovery from such a powerful word reflecting a state of well-being -- even if it is despite the challenge of a lifelong disorder that must be continually managed in one way or another.
Until a cure comes along, that is the best we have.
I agree that we need to do a much better job of educating the public about what 'living in recovery' with SMI means, including the fact that it is not the course every illness can/will take, and that science has yet to explain the confusing disparity in outcomes.
But if we don't give someone - especially young people at the outset of facing SMI - the tools to seek recovery, or the hope that it is possible, how are they supposed to find it, assuming they are so lucky? How are they supposed to find hope?
Dear A, I have to tell you that I'm a survivor. A survivor and the mother of a seriously mentally ill daughter who almost killed me. She thought I was a zombie sucking the life out of her 5y.o daughter. She attacked me from behind, stabbed me in the chest and proceeded to suffocate me for 8 minutes, while her daughter stood by screaming. I only survived by the grace of God.
My cell phone was lying next to me and I was able to grab it and dial 911. She was in max security for 17 mos.. and is now in a transitional facility. Please do not EVER say that meds should not be forced on someone. We have her back because she is now forced by court order to take her meds or go back to prison because she would be a threat to herself or others. I am disabled with PTSD, cannot work and am falling into poverty. Her daughter has PTSD. And all because she wasn't forced to take meds earlier.
So please, you don't know what you are saying.
B.
Barbara Gress,
So you and your daughter have PTSD? Well, I guess that means that both of you should be surveilled and forcibly drugged ASAP because you could both become murderers just like Eddie Ray Routh, Bradley Stone, and James Pitts. You say your daughter was delusional, but a hostile environment can trigger delusions. I doubt we'll ever know if that was the case with your family, but the person labeled as mentally ill should not be the only person at risk of becoming an inmate if toxic families, schools, workplaces, etc. place undue stressors on these vulnerable people.
A...One person's experience is not everyone's. If your experience was bad, and Laura Pogliano knew that, she would stand by your side and advocate for your rights to NOT be violated. But you don't know that because you don't know how compassionate and strong a person Laura is. In fact, you don't know anything about Laura but what you've read--and that is that her precious son died in his sleep. Your comment about "his mother making him take poisonous meds" is not only grossly inappropriate, it is inaccurate. Sometimes, the story is just not about you...
Donna Pitts,
So Laura Pogliano would "stand by my side and advocate for my rights to NOT be violated"? Ummm. . . no. She has spent years agitating for laws that allow "caregiving family members" to enlist doctors and judges to force their "ill" family members to submit to psychiatric control, regardless of whether or not these people are dangerous to themselves or others. These laws make no exception for people such as myself who have had "bad" experiences in the mental health system. In fact, they disproportionally hurt people like Zac. A person who is young, male, unemployed, and uneducated is far more likely to fall prey to pro-force psychiatry than any other segment of the population.
Actually, I've read quite a bit about Ms. Pogliano. She's been a very public pro-force psychiatry activist for quite a while now. She calls him a corpse when he relapses. She's dubbed the hands-on caregiving Zac needed as "the sick kid syndrome" because he needed "too much" attention. Even her depression and her excess weight are her son's fault. The relationship between Zac and his mother was reported to have become so acrimonious that he moved out of the house in a futile attempt to preserve his health. Although she has spent a great deal of money on his health care, many readers will be left wondering if he would have needed hundreds of thousands of dollars worth of drugs and hospitals if Laura or someone else in his life had a more accepting attitude about his needs and his future.
As Doris Fuller has said, most family members eventually quit even the pretense of caregiving. It's more likely than not that Ms. Pogliano would eventually have abdicated the responsibility for Zac's care to the state. But now, we'll never know for sure. She once asked "What happened to my life?" Now she has her answer.
I consider my son in remission. He is paranoid schizophrenic. There is no cure.
Well said, thank you so much for this.
I just came across the news of Zac's passing. It utterly crushed me. I remember reading about his story last year, while dealing with the shock of a recently diagnosed sister. I found the story so important. It was just overwhelming. To find out today that he died prompted me to brows the Internet for additional news. That's what led me hear. And I really love what you have to day. It's most thoughtful. I never realized the implications of the term recovery, and must admit that the thought of giving it up scares me. Particularly as i still have hope that my sister will achieve this goal. Although I completely understand that you do not intend for us to give up the hope for recovery, but merely replace it with more inclusive and regrettably realistic term. I somehow think that this could be a bit of a caregiver mentality. As one of the previous contributors argued. The roots are historical, meant to uplift a stigmatized illness, and offer hope that was not afforded to the mentally ill who were often shunned.. I suppose the greatest hope is recovery. Even if it rings hollow for the caregivers, it's never represents the highest of hopes for those who struggle to get through the torment of the illness. Nobody aims for just finishing a marathon while training. You aim for the gold, even if you only end up finishing. I think the distinction is logical to us as caregivers vs those that suffer who might need a more tangible hope... The memory of what they had. The best dream one can have would seem to be "normal".Even if being" normal" is troubling to the critical perspective and seems to be just plain unrealistic. I can't help but think that it reflects the longing of those who have lost the ability to live as they once were. I really hope that I dont come off as glib. I just wanted to offer my perspective. I completely understand your points and agree with all of them. It's probably better to let every sufferer decide their own vision of hope, so perhaps you are right. But that's what I was thinking after reflection. Thank you so much for posting and discussing this subject. It is such a wonderful resource to have for all of us. Best, Mladen
I agree that behavioral health is a misnomer, as is "recovery" for serious mental illnesses. Behavioral health makes it sound like we can behave our way out of the suffering, which is just not the case... AND recovery offers false hope to those with incurable severe disease. Thank you for sharing what I've been thinking for a while.
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