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Eliminate stigma from the inside out

November 27, 2017
by Michael Weiner, PhD, MCAP
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We seem to be constantly trying to change the public's perception of substance use disorders and of people who have them. At best, progress is slow. The terms “stigma” and “shame” both apply. Stigma may be what is inflicted upon us by others. Shame is what we carry.

We have been trying to change the world. That's hard to do. It's easier to “have the courage to change the things we can.” Is it possible that we create at least some of the shame that feeds the stigma? I believe so.

What we do is treat a chronic disease with a series of episodic interventions (an acute-care model), and then we can't understand why people feel like a failure (shame) when the symptoms of the disease become active. We leave our patients with the belief that the only measure of success is lifelong abstinence, so when a “relapse” (another word that evokes shame) occurs, they need to start over. This leaves people with a drawer full of white chips and several “walks of shame.” This is also the image we present to the public.

Maybe we have to change.

Longer-term view

Chronic diseases require monitoring over the course of a lifetime. It is recognized that symptoms might become active at any point in time, and shame is not attached to the recurrence of symptoms. People with hypertension are not shamed when their blood pressure becomes unstable.

The word “relapse” is not applied to the recovery process for any other chronic disease. “Relapse” is a word shrouded in shame.

As William White wrote in a 2016 blog, “The lapse/relapse language in the alcohol and drug problems arena emerged during the temperance movement and was linked in the public mind to lying, deceit, and low moral character—a product of sin rather than sickness.”

We treat patients with substance use disorders intensely for about a month and then they “graduate.” Let's say that we treat patients with an average age of 30 to 35. They can generally expect to live another 30 to 35 years. The only measure of success that we give them is lifespan abstinence. So we set up an expectation that a person with a chronic disease will be symptom-free for the 30 to 35 years he/she will spend in recovery. Does that even make sense?

And when symptoms do reoccur, we start the process all over again, only this time with the patient carrying even more shame. We treat another acute episode. This is another way we create failure.

Episodic care leads patients to say things such as, “I've been to treatment three times.” Doesn't that sound like, “I've failed three times”? I've stopped asking patients how many times they've been in treatment. I simply ask for a history.

Damaging messages

We continually send messages. Sometimes they convey that the patient had better get well fast, and in the way in which we want it to happen. We have made statements such as, “Come back when you're ready,” or, “You need to do more research.” These messages imply, “You're not worth my time right now.”

Similarly, I've often heard a professional say, “I'm not going to work harder on your recovery than you are.” On the other hand, we generally expect a patient to be ambivalent about recovery. So we expect a patient who is ambivalent and probably doesn't want to be in treatment in the first place to work hard? We can't have it both ways.

We also allow patients to diminish themselves. Have you ever heard people in treatment or recovery refer to themselves as “convicts” or “inmates”? I have, and too often I have just ignored it. This disease already beats them down. We don't have to help it. Today I intervene in the conversation.

For the patient, there is a fine line between being humble and feeling shame. Does a person have to surrender and say he/she is an alcoholic/addict? Using labels may depend upon the mutual support group that a person prefers. Labels are more regularly used in 12-Step recovery meetings than at SMART Recovery meetings. I suggest giving patients the option between the two.

Many people, including professionals who work very hard to help others, perceive that treatment for substance use disorders is not very effective. Among people in recovery, it appears that failure is expected as well. It may be argued that minimizing stigma and shame will result in better outcomes. But there we go again. Chronic diseases do not have outcomes. Treatments for acute conditions have outcomes. Treating a cold makes it go away. It's over. Chronic diseases hang around. When we measure the effectiveness of treatment by looking at the status of the disease over time, we measure up very well.

Where do we go from here?

Maybe we got here because we are all part of a culture that shaped our thinking. Are we over the temperance movement hangover yet? We may have accepted the stigma and shame far too easily. On the surface, the changes we need to make do not seem that difficult, but changing how we've been shaped takes time, effort and practice.

Michael Botticelli, former director of the Office of National Drug Control Policy (ONDCP), recommended changes in the language we use, in order to minimize stigma and allow for better communication with the medical community. Simple changes, such as using “recovery management” instead of “aftercare” and “recurrence” instead of “relapse,” are steps in the right direction.

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Comments

There is another way out of this never-ending cycle.

Rather than continue our obsession with trying to convince the public that addiction is a disease and that there is no shame or stigma in addiction, we should consider shifting the conversation to a disbaility paradigm.

For starters people in recovery from alcoholism and drug addiction are (with the exception of active illicit drug use) already considered a protected class under federal and state disability rights laws. This status of "disabled" is not subject to debate. It is settled law.

It follows then that to discriminate against a person in recovery, disabled by a history of addiction, is illegal and subject to complaints and litigation under the Americans with Disabilities Act, Fair Housing and other existing statutes.

When African-Americans were seeking full participation in U.S. society the fight was for new laws and enforcement of existing laws that prevented discrimination.

This is why I would rather support a recovery rights effort to say ban student loan or housing discrimination, rather than another anti-stigma campaign trying to convince Americans that my alcoholism/drug addiction is not some form of moral failure.

I don't particularly care if you think less of me because of my alcohol/drug using career. I do care if you don't afford me the same rights as other Americans.

I wrote something like this more than 20 years ago, suggesting that we move to a disability paradigm. Unfortunately, the need for a comprehensive disability education campaign aimed at both our sector and the general public is still much needed.

Thank you so much for commenting. I think that's one thing that AP gives us the opportunity to do. Your comment certainly deserves consideration.
Could be both: disability & disease.
Maybe SMART recovery's refusal to take a stand on the disease issue makes some sense. Causes too many heated debates.

I agree with much of what you say, but I disagree that chronic conditions cannot have 'outcomes'. I understand the essence of what you saying, in that there is no end point to the condition, but patient reported outcomes / goals can very much be set and measured, and do not have to be only set at the level of lifetime abstinence. As in physical health, an outcome or goal can be as much or as little as the patient wants it to be, eg for someone who has had a stroke, they may want to be able to walk to the bus stop, while another patient may wish to run a marathon. They are both outcomes and both relative to that individual patient's recovery. I don't see why the same principle cannot be applied in addiction treatment.

I agree with you! Sometimes I find that I'm/we're so conditioned to the shame that we do create that I find myself going to the opposite extreme.
It's similar to the changes in language recommended by Dr. Michael Botticelli, former head of ONDCP, and by Dr. David Mee-Lee. The recommendations are long overdue, but I'm so used to the language that perpetuates shame. I've been using language that perpetuates shame for so long that I have to try especially hard to change. So sometimes I go overboard in the opposite direction.
What pleases me is that you've taken the time to think about the topic and to comment. Thank you.
I hope that others keep it going.

The difference between positive treatment results and poor prevention education results is causality.
Causality in treatment is easy because it can be broad and general. Lack of power and how to find more power (12 step) works as well as correcting misinterpretations (SMART Recovery) . Causality in prevention is not so easy. This alone is the necessary and sufficient explanation for SUD outcomes. The problem is not environmental, social or vocabulary related.

SUDs are a development problem. Delayed development in severe SUD clients are obvious but only explain symptoms. The assumption has always been when dependence on a agent or process becomes operational all other development stops. This is only half right.

Two kinds of development based on affective risk response system research with over 5000 college students at Kennesaw Sate University was recently discovered. One type will never experience SUDs, the other kind always will. The tragic irony is that most accidents and deaths happen to the much larger group that will never experience SUDs. Their first mistake is their last mistake. This is called the prevention paradox. This is where education is most vital.

It was also discovered at risk students could be identified and intervened on at the level or perception risk factors. Waiting for symptoms to be diagnosed in order to be treated is a strategy that is no longer necessary.

Most Severe SUD students indicated a preparation for change never before realized. Effective education reduces resistance and encourages.

None of this is magic. It's just treatment empowered education combined with the latest affective risk research without selection bias. "Prehab Leveraging Perception To End Substance Abuse" was a research poster session at the National Conference in Denver this year. The book is available on Kindle or Amazon. I look forward to the Houston conference. Collaboration we have. Collaboration and causality can end Substance Use Disorders.

Prehab; You seem to be saying that you found an assessment tool that is 100% valid. If so, you've developed a tool unlike any that I have ever known. "Waiting for symptoms to be diagnosed in order to be treated is a strategy that is no longer necessary."
I suppose that I can do some thinking and relate your comments to eliminating shame. The connection seems remote.

A solution to shame is long over due.

My models and assessment are accurate because they are based on the human affective risk response system. Turns out humans are not rational, they are much better than that.

I was also extremely fortunate to find a way to remove selection bias, the principle barrier to progress in our field.

It is known that there is no good or bad but thinking makes it so. I can model this.

Discovering a causal development problem and solution eliminates SUD progression and therefore symptoms like shame. The Prehab program and MAPP model are designed to remove shame in the treatment configuration. This is a good but limited objective. Empirical evidence suggests that educating, identifying and intervening before progression is the way forward.

The research poster I presented at the National NAADAC convention in Denver this year is at www.duncanparkpress.com. This research is easy to replicate. Judge for yourself. I am available for training and demonstrations.

I feel a need to comment on my own article. I'm a person who has been abstinent for a good number of days with the help of 12-step recovery. There have always been things that I didn't care for, but I always knew that AA was a place where I could find people very much like myself. A colleague recently pointed out that some things that have been recommended to minimize shame would be counter to what is expected in 12-step recovery. That's true. We need to make certain that people are always respectful at AA meetings. We may teach our patients to consider a white chip a "welcome back" chip rather than a "start over" chip.
To this day I think "recurrence" when I hear "relapse," but at a meeting I do it in silence.
Change happens. It's slow. We all do our part.

Unconditional Positive Regard is a concept developed by humanistic psychologist Carl Rogers.

It involves suspending all judgments and accepting another no matter what the person says or does. Only in this environment can someone feel safe and grow.

My experience as an addiction counselor was sorely tested in a graduate psychology program that embraced Rogerian client-centered approaches. Until then my training focused on controlling and directing clients in ways that I believed would be beneficial for their recovery. The concepts of self-direction and client choice were thought, back then at least, to be totally inappropriate for someone caught up in an addiction.

From my experience in recovery and working in the addictions field for several decades I still believe that unconditional positive regard while rarely practiced, could be a positive alternative to the customary approaches in most treatment programs.

In recent years the self-empowerment movement has mounted a credible alternative to traditional 12-step "powerless" approaches and is based on the principle that client choice trumps therapist's directions.

In this environment a return to drinking or drug use is just that, and does not require a qualifier that passes judgment.

In my course for alcohol and drug counselors at the University of California, Berkeley I regularly screen the documentary Lost in Woonsocket. The movie documents a series of encounters between the two filmakers John and Andre and two homeless alcoholics Mark and Normand. The behavior of John and Andre perfectly embodies Rogers' unconditional positive regard. Their assistance is not predicated on Mark and Normand's motivation for sobriety, but rather offerred without any conditions.

No matter what approach a therapist takes it has to start with unconditional positive regard. An approach that begins with confrontation has never made any sense to me. There may be times when confrontation is appropriate, but for it to be effective, unconditional positive regard would have to be established first.

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