He said, I should retire from life and avoid stress. I have come to call my psychiatrist’s pronouncement a “prognosis of doom”. He was condemning me to a life of handicaptivity wherein I was expected to take high dose neuroleptics, avoid stress, retire from life and I was not even 18 years old! My psychiatrist did not understand that boredom is stressful! A life devoid of meaning and purpose is stressful! A vegetative life is stressful. A life in handicaptivity, lived out within the confines of the human services landscape, where the only people who spend time with you, are people who are paid to be with you – that is stressful! Living on disability checks from the government is stressful.
When I was diagnosed I needed hopeful messages and role models. I needed to hear that there were pathways into a better future for me. I needed to connect with others who had been diagnosed with schizophrenia and who had recovered lives of meaning and purpose. I needed to find others who had completed college and who had jobs and who got married and had families, and had an apartment and a car.
Why is hope important to recovery? Because hope is the root of life’s energy. In order to recover, I had to turn away from the wish that psychiatrists could fix me. I had to turn away from the myth that psychiatric treatments could cure me. Instead, I had to mobilize all of the energy I had. I had to become an active partner in my recovery. I had to learn to work collaboratively with my treatment team and to draw strength from the wisdom of my peers. I had to begin striving for my goals, not when I was “all better”, but from day one. I had to believe that there was a life for me beyond the confines of the mental health system. That is hope. Hope is the tenacious pursuit of pathways to a better life, despite the odds. Without hope, there is no recovery.
Amen. Please go and read the whole post at her blog and spend some time poking around her posts.
From On Being, some insight on hope and how people can foster it or inhibit its development:
Ms. Brown: You know, one of the most interesting things I’ve found in doing this work is, you know, something the wholehearted share in common is this real profound sense of hopefulness. And as I got into the literature on hope, very specifically C.R. Snyder’s work from the University of Kansas at Lawrence, that hope is a function of struggle.
Ms. Tippett: Right. I think that’s one of the most stunning sentences that I saw in your writing.
Ms. Brown: Yeah, and that hope is not an emotion, but hope is
a cognitive, behavioral process that we learn when we experience adversity, when we have relationships that are trustworthy, when people have faith in our ability to get out of a jam.
Ms. Tippett: Right, which is different from this pattern of having faith in us which means telling us everything we do is wonderful and shielding us from pain as long as they can.
Ms. Brown: Right. And, you know, I’m literally — I don’t even know how to talk about it. It really just floors me that, when I go out and I do a lot of talks for big corporations, you know, Fortune 100 companies, how many people tell me — like the HR folks who I end up — luckily, I love them and I get to talk to them a lot, who will tell me how often parents call to go over the performance evaluation of their children or to find out why they didn’t get a raise or a promotion.
Ms. Tippett: Really?
Ms. Brown: Yeah, oh, yeah.
Ms. Tippett: I mean, I just took my daughter to college and we got this lecture, the parents and the families who were there, from like the Dean of Students and it was so clear that they were dealing with that same thing, right? I mean, they basically said I need you to understand that we’re going to take great care of your gem and also that my relationship is to them and not to you. We got this lecture, which was clearly based on parents still trying to control. You know, again, it’s like, boy, we know this, don’t we, this desire that you have to create a beautiful world and life and experience for these people you love?
Ms. Brown: But you know what? I think we lose sight of the beauty. The most beautiful things I look back on in my life are coming out from underneath things I didn’t know I could get out from underneath. You know, the moments I look back in my life and think, God, those are the moments that made me, were moments of struggle.
Ms. Tippett: Or I look back at things I did where, if my parents or I had understood how crazy it was, like if it had been me, I would have tried to intervene and rescue?
Ms. Brown: Oh, for sure.
Ms. Tippett: And you’re right. Those are the moments you become who you are.
Ms. Brown: You know, and I’ve seen how this research has really changed, you know, like I’ll give you just a very specific example. My daughter decides, you know, that she wants to try out for something that she’s really new at. You know, a sport or something that she’s just taken up.
And I think before, maybe even three years ago, before this research, not only before I wrote it up, before I started trying to practice it and live it, I think I would have been the parent who said, you know, either let’s get you in 34 camps before you try out so you’ve mastered it, or I don’t think you should try out for that because there are girls who’ve been playing this sport as long as you’ve been playing soccer …
Ms. Tippett: And you want to shield her from disappointment.
Ms. Brown: Right. And I want to take away that moment that I had. You know, it wasn’t the moment. When I think back and I talk to parents a lot about this, it wasn’t the hard moments that we don’t want to expose them to. It was the isolation and shame we felt around those moments because a lot of us didn’t have people to process them with.
Like I think when I went out for something and didn’t make it, I don’t think my parents were ashamed of me, but I think they were ashamed for me. I don’t think they knew how to talk about that. I don’t think we had a conversation. I know we didn’t have a conversation that I can have with my daughter today where I say, you know what, I’m so proud of you not only for trying, but for letting the people around you who you care about, you let us know how much you wanted it, and it doesn’t get braver than that.
Ms. Tippett: Right. Right. Well, I mean, here’s this other sentence that’s a corollary to the sentence hope is a function of struggle. You say you look at a baby, your newborn baby is hard-wired for struggle. It’s built in us that that is how we are going to shape, that that’s what we’re going to encounter, that’s how we’re going to shape ourselves. That’s actually a really hard thing to take in, you know, as a parent, especially thinking about those moments early on when you first meet this being that is going to have dominance over your life.
Ms. Brown: Yeah, because I think we look and think I can make this right. I can do for her or him what wasn’t done for me. I can protect them from the things that hurt me. I think we are so much more hard-wired for who we are than what people, especially parents, want to believe. And I don’t think our job as parents is to make everything right and perfect and beautiful and true. I think our job is, during struggle, to look at our kids and say, yeah, this is hard and this is tough and you’re hurt.
Ms. Tippett: And you’re not alone, you’re not alone.
Ms. Brown: But you’re not alone.
Ms. Tippett: I’m not going to fix it, but you’re not alone.
Ms. Brown: Right, you’re not alone and I want to make sure you understand that this doesn’t change the fact that you’re worthy of love and belonging.
For most of U.S. history, employers did not provide adequate mental health benefits in the insurance packages they assembled for employees. This wasn’t a controversial policy: most labor unions were quite happy to trade “mental for dental” when they negotiated fringe benefits. But over time, more and more families who were being destroyed by a loved one’s schizophrenia or alcoholism or manic depression went through a second round of suffering when they discovered that their employer-based insurance wouldn’t pay for care.
These families made common cause with other advocates to mount a 12-year push for equal treatment, which culminated in the 2008 Wellstone-Domenici Mental Health Parity and Addiction Act. As a result of this law, the more than 100 million Americans who receive insurance through large employers are now guaranteed that their mental health-related benefits will be comparable to those for the treatment of other disorders.
Also in 2008, a major effort to reform Medicare passed, one that critically included a little-noticed mental health provision that just came into full effect this year. Since its creation, Medicare had covered 80% of all outpatient care except for mental health and addiction treatment, only 50% of which was covered. This extremely high co-payment effectively prevented many Medicare recipients from receiving mental health care. Today, however, the 50 million senior citizens and disabled persons who rely on Medicare enjoy the same level of coverage for outpatient psychiatric care as they do for all other types of medical treatment.
The 2010 Affordable Care Act is even more transformative. The law allows a parent to keep their children on family health insurance until the age of 26, thereby fully covering the age range in which almost all serious mental illnesses and addictions begin. Furthermore, the law defines insurance coverage for mental illness and addiction care as “essential health benefits.” As a result, both the Medicaid expansion and the private plans sold on health exchanges all cover care for psychiatric disorders at the same level as other diseases. The Department of Health and Human Services estimates that over 60 million Americans will receive improved mental health insurance coverage because of the provisions of the ACA.
The idea was simple. There are a few core beliefs about recovery that make a difference. To the extent you are able to live them your recovery will be positively impacted.
My list of core beliefs was simple:
Life can get better.
I can help make it better.
I can learn the things I need to do to make it better.
I have support. People care about me and what I am doing.
What I do matters. It has meaning and purpose.
This rings very true for addiction recovery as well. Any practitioner or program that ignores these dimensions is inadequate. Some people will need no assistance with this kind of recovery–if we reduce their symptoms they can take care of all of this on their own without mutual aid or extended professional help. (I’m thinking of people with major depression or a problem drinker.) Others will more severe and chronic mental illness or substance use disorder will need lifelong professional and/or peer support. (Here, I’m thinking of an addict or chronic, debilitating mental illness.)
There’s a lot of pushback on this for addiction. Just this weekend, Anne Fletcher tweeted a dismissive reaction to a Bill White post about developing geographic communities of recovery.
Would she have the same reaction to a post about building communities of recovery for people with chronic and severe mental illness? Would she tweet a response that implies it’s overkill and these people (Who, together, are re-engaging in full family, occupational and community life.) need discover that there’s more to life and they need to get out of some growth-limiting bubble?
There’s been a whole new wave of these kinds of reactions recently. To me, they suggest a couple of beliefs:
The failure to acknowledge the different needs of people who have less severe or time-limited problems with alcohol and other drugs versus those with severe, chronic and debilitating addictions. Their reactions often focus on the experiences of the former, framing substance use disorders as a lifestyle choice.
The perception that recovery advocates (12 step recovery in particular) can’t tell the difference between these two groups and are bent on evangelizing every problem user into their one and only path to recovery while obstructing access to any treatment or recovery support that isn’t perfectly compatible.
But I know recovery is never a thing to have, but a way of doing.
Interesting that there is so much resistance to lifestyle change as an approach to managing addiction while there’s no dispute that lifestyle change is critical to successful management of other chronic illnesses and that peer support is important for successfully initiating and sustaining lifestyle change.
I don’t hear any of these reactions regarding people who join a gym, spend an hour there 5 days a week, start eating healthier, integrate being physically healthy into their identity and develop new social networks around these changes, like, say, a tennis league or a biking group. Why is that? We don’t hear that push back, and we’re not even talking about people who were occupationally, socially, emotionally and familially impaired. And, if some faction of these people exhibited evangelical zeal and insisted this was the only way to be healthy and that everyone needed to do this, would we be so dismissive of scholarly work describing the development of some communities organized around this kind of wellness for really sick people?
Sherwin Nuland’s experience with depression led to the observation that some of his beliefs were bound up with his symptoms. [emphasis mine]
And they were indeed a symptom of a long-term obsessional neurosis. And if I was going to get out of this depression, I was going to have to give that all up. And I did. Interestingly, you know, people think well, you know, we’ll take pills, we’ll take electroshock therapy, we’ll get psychotherapy, and we will gradually get better and they forget that you reach a point in an emotional illness, on the upswing, when you’re starting to get better, when you have to make a decision because you’re now strong enough to make it. The decision is, ‘Am I going to hang on to these symptoms?’ Because the symptoms become very meaningful to you, you depend on them, you’re comfortable with them.They represent things to you.
This rings very true for both mental illness and addiction recovery.
Findings from a study of adverse interpersonal effects from antidepressants were recently published online. The adverse interpersonal effects we reported by more than half of the subjects, though more than half of the subjects were on them for 3 years.
The gated, full article described a cluster of reported side-effects that it described as “closing down”. Note the last sentence. [emphasis mine]
Our findings, from the largest sample to date, suggest that it may be important to follow up results from smaller, qualitative studies, with large-scale surveys. All four of the emotional or interpersonal effects identified in previous qualitative studies (Gibson et al., 2014, Goldberg and Moncrieff, 2011 and MIND, 2012) were reported to be very common: Feeling Emotionally Numb (60%), Feeling Not Like Myself (52%), Reduction In Positive Feelings (42%), Caring Less About Others (39%). Between 16% and 35% experienced these four effects as either ‘moderate’ or ‘severe’. Furthermore, all four effects were strongly associated with the belief that suicidality was experienced ‘as a result’ of the ADs, as was Agitation. This is consistent with a study that found suicidality associated with the adverse effects ‘emotional blunting’ and ‘emotional instability’ (Goldberg and Moncrieff, 2011).
Younger people were more likely to experience Feeling Emotionally Numb and Feeling Not Like Myself, and men were more likely to experience Reduction In Positive Feelings and Caring Less About Others.
This diminished capacity to experience feelings, positive or negative, and to care about other people, might be characterized as a sort of ‘closing down’, a withdrawal from the emotional and interpersonal world. This might be considered an exacerbation of the problems for which ADs are prescribed in the first place. These effects may also reduce the probability of using other pathways to recovery.
The continued use of the drugs makes one wonder if some of these adverse effects, like numbing, aren’t also experienced as a benefit.