Changing the Relapse Narrative

By Cortland Pfeffer 10/30/16

Shame creates secrets, secrets create isolation, and isolation creates depression. Depression can create more drug use.

Image: 
woman sitting no a chair alone in a dark room.

One of the saddest lessons in history is this: If we’ve been bamboozled long enough, we tend to reject any evidence of the bamboozle. We’re no longer interested in finding out the truth. The bamboozle has captured us. It’s simply too painful to acknowledge, even to ourselves, that we’ve been taken. Once you give a charlatan power over you, you almost never get it back.
-Carl Sagan

A few weeks ago, my friend died of a heart attack. It was his second heart attack. He was only 38 years old. I kept thinking to myself, what a loser this guy is. He doesn’t care about anyone or anything but himself! What kind of a person chooses the lifestyle he wants over the people who loved him? He had a previous heart attack at 33; it was in his genes and he knew it.

He was told by numerous doctors to stop smoking, to exercise, and to stop eating as much. He did not listen. He had another heart attack. His daughters cried, his family cried, and he did not care. He was a selfish person and I can’t help but think I am glad that he is dead. He deserved to die. The world is a better place now without him. He weighed 300 pounds when his ideal weight was 160. When someone takes up more resources than they need, that is selfish, and that is how the Native Americans define mental illness. He was a leech, sucking the blood from his family and hurting everyone who loved him. We are better off without the people who die of heart attacks every day. They deserve what they get. They do not learn and they become a burden on society and our healthcare system.

Does what I have written about this heart attack victim sound insensitive? Does it bother you that I am calling him such names when he had a disease? This is what someone with addiction goes through every single day. People who are addicted to drugs have a disease or mental disorder, and they have lost control of their brain. However, the way I talked about the heart attack victim is exactly how the majority of us still see people who are addicted to drugs or alcohol. It has to change.

I want to share two stories of patients that I had the opportunity to meet while I did ride-alongs in an ambulance recently.

In the first ambulance, there is a man named “Jake.” Jake is a 54-year-old male who just suffered his third heart attack. We arrive at the house and the family is in tears. The wife is sobbing uncontrollably. The children all have their heads down and they are in pain. He is not breathing. We are able to get him to breathe again at the home and the family is relieved. We rush him into the ambulance and drive to the nearest hospital. Grateful family members grab their phones and give all the necessary information. They all get into their cars and get on their phones to call other family members who will all meet at the hospital to offer support.

In the second ambulance, there is a woman named “Karly.” Karly is a 46-year-old female who has just been found in her parent’s basement. She has overdosed on heroin for the third time. The family is disgusted. The parents are shaking their heads in embarrassment. The siblings have a look of anger on their faces. Her children are scared and are looking at the adults and their reactions. Karly is not breathing. We get her to breathe again and rush her into the ambulance. We inform the family of where we will be. They tell us to have the doctors call them when it is over. They do not want to expose the children to this. They are going to enjoy their day. We offered to bring anyone in the ambulance with us. They all declined to go. They did not give their phone numbers. They said, “She can get a hold of us if she wants when she is better.”

You can see the difference already. This is how our society treats the chronic relapse of both these diseases. That’s right, they are both relapses. People who struggle with either of these chronic diseases are frequently non-compliant when it comes to treatment. Both cost money and pain to family members. Both require a change in lifestyle and behavior. Yet one is looked at as a victim: “Poor Jake, he just had another heart attack.” The other is looked at as a bad person: “Karly did it again, and she just doesn’t care about anyone but herself.”

I will continue these stories in a bit.

A closer look at the statistics reveals information that the general public is never made aware of. The relapse rate for someone with heart disease or hypertension is 50-70%. This means that patients are told what diet they need to follow, what medicines to take, and what lifestyle modifications they need to make, but they cannot make these life adjustments. They are not compliant with the recommendations. They “relapse" by having another stroke or another heart attack. For asthma, the rate is also 50-70%. All of these diseases create worry and fear of losing the loved one. The cost is astronomical, especially when you take into account the effects of non-compliance. Of all the prescriptions written by doctors every year for illnesses such as asthma and diabetes, only about half of them are ever filled. These are conditions that could be treated successfully and the associated costs would decrease with patient compliance. However, we look at these patients as just that, as patients, and as victims.

Now how about addiction and mental health? That relapse rate is actually smaller, around 40-60%. It also costs less per year when the patient relapses. Just as with the other diseases, these patients have a hard time following recommendations, changing lifestyle, and taking medications. What is different is that trauma usually is a precursor to these conditions. It has been said that child maltreatment is to addictions and mental health as smoking is to other chronic medical conditions. It may not cause it, but if a person is predisposed to the disease, it will bring it out. So we have someone who likely was the victim of a childhood trauma, has a disease and is actually more compliant and costs less money when they relapse. However, society shames people with these diseases. They roll their eyes when these patients relapse, which actually causes more shame and more trauma. The power of stigma prevents people from seeking help. 

We have to change the narrative about relapse. It is not always a bad thing, sometimes it is a turning point. If we point fingers and roll our eyes and make judgments when people relapse, they will not be open about it. They will feel shame. Shame creates secrets, secrets create isolation, and isolation creates depression. Depression can create more drug use. I myself have relapsed about four times. One of the first times I relapsed, I went back to the treatment center. I was ashamed, embarrassed and scared. I could not believe this had happened. I had lost the support of everyone. You know what happened when I went through the doors of the treatment center? The woman at the front desk said “Hi, how have you been?” She treated me like I was not a bad person. She treated me the way heart attack victims get treated when they have a second heart attack, like a human being and with compassion. No one rolled their eyes. The whole treatment team treated me with respect. However, I was lucky; after spending 21 years in this environment, both as a patient and as a staff member, I can assure you this is not the norm. I believe to this day if I had felt judged by her, I would not be sober today.

Now back to the two patients.

I watched as we came back in the following days to the same hospital. What I saw was Jake, the heart attack victim, being treated with concern. You can see it on the faces of the doctors and nurses. After Jake was stabilized, the doctors were happy. They felt they had done their job. They provided the education needed for Jake to stay healthy. The heart unit is surrounded with posters of resources to help maintain one's recovery. The social workers give the family information about all kinds of foundations that contribute to helping heart attack victims and their families. There are posters all over the medical unit offering activities and help for heart patients. The nurses and doctors come in and make sure Jake is comfortable and doing well. The whole family is around and happy. They all are giving hugs and are ecstatic, there are cards and balloons and gifts all over his room. You can feel the love and support and it is wonderful.

On Karly's floor, I saw nothing. Karly was in a dark room, and she was very sick. There was no family around. No cards, no gifts. When I stopped at the nurse’s station, you could hear them talking about how she is “sucking up all the taxpayers’ money.” They comment that she is a bad person and “how could she do this to her kids? She should just be in jail.” The social worker wants to commit her, to force her to go to a treatment center and force medications on her that she says do not work. The staff do not want to listen to her and work with her to help her recover, they want to be in charge and dictate her recovery. No one really listens to Karly. They consider her a “frequent flyer” and a “manipulator.” No phone calls. You can see she is in pain, and she believes she is a bad person and wants to be dead. According to her chart, she was abused as a child; she was now being shamed and crucified even more. There are no posters up, no activities or support program brochures on this unit. It is in a dark corner of the hospital where they can pretend she's not even there.

As I started to visit with these patients and follow them and get to know them, I saw this huge difference. They were both struggling, but one had support and one did not.

What happened was, they both recovered. When you recover from a heart disease, you have a better quality of life. You can breathe better and have more time on earth to spend with your loved ones. When you recover from addiction or mental illness, life opens up to you. You are able to be present for yourself and your family and friends.

One posted on Facebook the other day, “3 years since last heart attack, down 100 pounds.” 1,500 likes, 100 comments, all supportive.

The other one also posted, “3 years since I died, I am now sober 3 years. For all that I have hurt I am sorry for my transgressions. I love all of you.” 15 likes, 4 comments. You see the response is totally different. Even in recovery, the stigma continues.

Cortland Pfeffer spent years as a patient in psychiatric hospitals, treatment centers, and jails before becoming a registered nurse and working in the same facilities. His $3.99 e-book, Taking the Mask Off, is a story about recovery that goes inside the mental health and addiction field, revealing the problems and providing a spiritual solution.

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