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.
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.
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.