We seem to be constantly trying to change the public’s perception of substance use disorders and of people with substance use disorders. At best progress is slow. The terms “stigma” and “shame” have a lot in common. “Stigma” may be what is inflicted upon us by others. “Shame” is what we carry.
We’ve 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? It’s possible that we do.
Let’s take a look:
What we do is treat a chronic disease (substance use disorders) with a series of episodic interventions (an acute care model) and we can’t understand why people feel like failures (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 conjures up shame) occurs they need to start all over. This leaves people with a drawer full of white chips and several “walks of shame.”
This is also the image that 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 may become active at any point in time and shame is not attached to the reoccurrence 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 that is shrouded in shame.
“The lapse/relapse language within this phrase is historically rooted in morality and religion, not health and medicine, and comes with considerable historical baggage. 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 (Bill White blog, 2016).”
We treat patients with substance use disorders intensely for about a month and then they graduate. They often become members of an Alumni Association.
Let’s say that we treat patients with an average age of 30 to 35 years. 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 that they 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 have a patient with even more shame. We treat another acute episode. This is another way that we create failure.
Episodic care leads patients to say things like “I’ve been to treatment three times. “Doesn’t that sound like “I’ve failed three times?” Yes, it does.
I’ve stopped asking “how many times have you been in treatment?” I simply ask for a history.
The messages we send/ the messages we allow:
We continuously send messages. Sometimes they convey that you better get well fast and in the way we want you to do it. We have made statements like “come back when you’re ready,” or “you need to do more research.”
These messages imply things like “you’re not worth my time right now.”
Similarly, I’ve often heard the expression,” I’m not going to work harder on your recovery than you are.”
On the other hand, we generally expect a patient to be in denial and ambivalent about recovery. So we expect a patient who is in denial of their disease and probably doesn’t really 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. Ever heard people in treatment or recovery refer to them selves as “convicts” or “inmates?” I have, and too many times I’ve just ignored it.
The disease beats them down. We don’t have to help it.
Today, I intervene in the conversation.
Are labels necessary?
Are we developing the quality of humility or creating more shame? It’s a tough call. There may be a fine line between being humble and feeling shame. Does a person have to surrender and say, “my name is……., I’m an ………?"
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 meetings (if unfamiliar with SMART go to: (www.smartrecovery.org ). There is flexibility at both.
I suggest giving patients the option.
Do we believe that treatment works?
A lot of people, including professionals who work very hard to help others, perceive that treatment for substance use disorders is not very effective. The same can be said for people in recovery. It seems like failure is expected.
It may be argued that minimizing stigma and shame will result in better outcomes. Well, 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.
How did we get here & how do we fix it?
Maybe we got here because we are all a part of the 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.
Stigma and shame keeps people from coming to treatment and it keeps people from coming back if they need to. I suspect that there will be people who read this and say something like we can’t help people until they are willing to change. A better question may be “are we willing to change?” Do we have “the courage to change the things we can?”