The Destructive Nature of Family Stigma - Substance & Mental Health Illness

 

As sick as you are - Now and Forever

Written by and for people with Lived Experience Pt Alberni CAT Families Helping Families

Today’s Learning Moment – 11 02 26 Issue: The Destructive Nature of Family Stigma - Substance and Mental Health Illness.

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“It’s my business and I don’t tell anyone!”

I can’t tell you how many times I’ve heard that sentence from other families. I’ve also screamed it in my mind so often and for so long it seems burned into the very fabric of who I am.

I’m talking of course of the feelings that well up due to having someone in our family we love who is suffering from mental and substance illness. Many of our extended family, community, and society as a whole view these diseases in an atrocious way. None of us wants to hear someone bad mouth a person we love with these illnesses. We already intuitively feel their judgmental and hypercritical views. We see it in body language, facial expressions and certainly hear it in their hurtful comments. Then there are those people who just flat out spout vitriol words that are so hurtful and disgusting they cut to the very quick.

Possibly all of these reactions from others would be bearable if they were driven by actual knowledge of substance use. Sadly, real knowledge, experience or evidence-based facts have absolutely nothing to do with most people’s verbal bigotry and intolerance.

Bigotry is a strong word. It invokes thoughts of the very worst behaviours people are capable of in our world. Certainly, if we accused these thoughtless people of bigotry they would be shocked and hopefully dismayed at the horrible hurt they cause families.

I have heard people who I considered friends or who I believed cared for me and the struggles in my family say, “get rid of them!, you’ll be better off, “they should just die!” or “ship them somewhere like the far North!”  or “they could stop if they wanted to!” or the most typical statement, “Throw them all in jail!”. I’ve even had doctors tell me that our family should just completely separate our selves from the person we love. I’ve learned to clam up. Otherwise, most interactions with unthinking people end up emotionally painful and destructive. Both for me and my relationship with them.

I get some of the reasons why. Most of society literally view people with substance and mental illness like plague carriers. People believe the negative behaviours of these ill individuals as their single defining character trait. Never seeing past the illness and through to the real human being who is suffering.  Combined with the mistaken belief that there essentially is no hope of recovery makes these ill people worse than lepers in our world.

Folks with substance, mental health and homelessness are the “untouchables” in our culture

On an intellectual level, I know the illness of my family member is not my fault. However, my feelings deep down are twisted with guilt, feelings of inadequacies and being unable to control any aspect of their sickness. Although evidence-based knowledge says that there is hope for at least “control” of these illnesses, it seems decades away. Today and in the foreseeable days, all I see for them is a continuing downward spiral into oblivion.

Every moment of every day is filled with thoughts of what could I have done that would result in a different outcome. How can I get the treatment they need? Why aren’t people more empathetic? Why isn’t their housing for them?  How do I get them to accept treatment? – absolutely none of these and dozens of other questions seem to have any answers or solutions. Some days, I wonder why I haven’t gone insane myself.

It’s still impossible for me to accept the reality of mental and substance illness for my family member. Mostly because it’s so intertwined with my own feelings that in some way it’s my fault. Either because of my genetics or something I didn’t do to protect them in their childhood.

Most of us don’t talk about or don’t even acknowledge the catastrophic events that are possible in our lives, like our own mortality or that of people we love. We push these things to the dark recesses of our mind, knowing that they are possible, but not acknowledging them until they happen. When they do, most of us deny, negotiate, get angry, grieve and eventually move on. It’s a process. Unfortunately, mental and substance illness in a family goes on for life. Always there, always present and continuously destructive with no foreseeable solution or way forward.

I’ve learned to keep it all to myself because almost always I get two responses from people. They don’t want to hear it or they tell me to get rid of the problem.

So I know all about stigma. My own feelings of shame, disgrace, inadequacies and humiliation. The stigma my family member suffers daily is even worse. I’ve come to hate the word. It represents everything wrong in the thinking of people around one of the biggest social and health challenges we face today.

Before mental health and substance illness took the person I love, they were a caring, happy and loving person. They were always the first to help. They were that person everyone wanted to be around. A friend when you needed one. A gentle person who was loving and kind. A person who would offer help to anyone they thought was in need. Somewhere inside, that same person still exists. I see flashes of them every once and a while. Today they seem completely broken and unreachable, but perhaps one day the real them will reach out through the fog of their illnesses and come back to us. I wait for that day knowing that they are still that person deep inside. YOU need to know when you see a person with substance or mental health illnesses that they are far more than the “addict” you see. Far, far more!

Tucking You In with Teddy Will always Be In My Heart

For other families struggling with these feelings, you need to know that almost all families that have these two diseases within them are in the very same struggle as you. Self and social stigma around mental and health illness are as common as the air we breathe.

Acknowledge your own feelings is the first step in moving forward. It’s not easy and it won’t end with the acceptance of our feelings of shame and stigma. It comes in waves. Knowing this in itself will allow you to recognize the destructive behaviour of self-stigma and hopefully allow you to relegate it where it needs to be. Out of our thinking.

For the rest of the world, I’m asking you to educate yourself to current evidence-based knowledge that mental health and substance use are diseases. Let go of your prejudices and preconceptions that substance use is a choice or that in some way the 1980’s idea of a War on Drugs could work. Obviously, that has now been proven to be completely ridiculous.

Families who have members with substance illness need you to be empathic. We need you to see beyond the behaviours of people with mental health and substance illness and see them as humans. People with dreams, hope and feelings. People struggling with trauma, pain and in the throes of a horrible disease. We’re not asking you to fix us or them. All they and we need is kindness and for you to be there in the moment with a little bit of compassion

Author: Ron Merk
Ron is a person with lived experience. He advocates for families living with members suffering from mental health and substance illness.

Articles on Stigma:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1489832/

https://www.ncbi.nlm.nih.gov/books/NBK384923/

Article on Substance Use - Fallacy of Choice

https://www.sciencedirect.com/science/article/abs/pii/S037687161830320X

https://guilfordjournals.com/doi/abs/10.1521/pdps.2015.43.2.243

Families Helping Families is an initiative of the Port Alberni Community Action Team. We send out “Learning Moment” articles regularly to help folks understand substance illness. Knowledge is vital in understanding the illness of our family members. You may copy, distribute or share our articles as long as you retain the attribution. You can be added to our distribution list by dropping us a note to - albernihelp@gmail.com