Define Cured - Substance and Mental Health Illness

What Healed Looks Like

Written by and for people with Lived Experience - Port Alberni Community Action Team - Families Helping Families

Today’s Learning Moment – 01 11 21 Issue: Defining Cured – Substance and Mental Health Illness

Try doing a search on Google for what success looks like for recovery from substance use or mental health illness. It’s a lot like trying to pin down clouds or herd cats. In regards to your family member, you may have even approached health care professionals with this question. I’m betting your experience mirrors mine. We often run into a void when we search for information that quantifies what “healed” looks like.

Ideas you may receive might be unclear. They can differ depending on the source. As an example, some traditional and prominent viewpoints require not using any substances regardless of mental health challenges. Certainly, this view is understandable, as substance use can cloud what’s going on with mental health illness. All of this can be very confusing as there can be many ways to reach the end state we call recovery.
 
I’d venture to say that most of us hardly ever get to this talk or even consider it until possibly years of treatment have gone by. When we’re talking with health care people, our focus is usually dealing with our family member’s latest critical event caused by their illness — not on future outcomes. I’d even go so far as to say that when it does come up, you’re most likely left with a sense of being unsatisfied with information you’ve received.

There are lots of reasons for this. I’ll use an analogy here - it’s hard to concentrate on restoring the forest when you're fighting a huge forest fire.

Then there’s the stigma of these co-occurring disorders, both for the person suffering and their family. Stigma or the fear of judgment from stigma often prevents us from having these difficult but necessary discussions. We are often afraid of being judged as a bad family and or having contributed in some way to the problems faced from the symptoms of SUD and Mental Health disorders. Afraid that it is somehow our fault.

Health care people may be uncertain about discussing this topic with family for many reasons. I’ve had some quote privacy worries. However, I believe some of their concerns are due to the difficulty of predicting future outcomes. Also, because of the perceived hopes, treatment options and healing outcomes of patients and family. 

However, privacy is a real concern. One of the first learnings to take away from this article is that families need to ask professionals to get permission from patients so they can discuss treatment plans and outcomes with the family.

Families own part of the burden for some of the reluctance of communication. Often, a family’s misperception and world views of substance use and mental health can be harmful to the patient's care proposal. We can end up interfering with the overall treatment plan that the patient and their care team have negotiated.

It is difficult for health professionals to introduce new information to the family if families have rigid and possibly harmful beliefs about concurrent disorders i.e. don’t support OATS, harm reduction, outpatient versus inpatient treatment or treating addiction before mental health. In other words, what we don’t know in the beginning, can and does hurt us and the patient.

Professionals will hesitant to point fingers or blame. That’s counterproductive for everyone. No one is going to tell the family they’re not ready to hear treatment outcomes because they don’t have the necessary understanding of the difficulties of the care plan. There is a delicate balance that must be reached and maintained in what best supports the patient and family involvement. In some cases, health professionals may exclude family if their wants and needs are too widely different from the patient’s wants and needs.

Perceptions of healing from “regular” medical conditions undermines the difficulties of healing from a substance or mental illness. I say this because, for most health challenges, we enter into a partnership with health professionals that results in a complete cure. At the very least, for most illnesses, we go back to a fully functioning person. We might be taking medications or treatments, but from the view of people around us, they can’t tell we’re different.

Some conditions, like heart disease or diabetes, become chronic conditions. In that word, “chronic” is the beginning of understanding around healing success for a substance or mental health illness. Also, the world perceives diabetes or other chronic diseases differently than mental health or substance illness.

No one, including professionals, wants to give bad news. Managing expectation is difficult especially for a substance or mental illness, not only because they’re both likely to be long term “chronic” conditions, but also because they almost always change the personalities of the patient suffering from them. Those changes also can result in long term ability changes in life and interpersonal skills. More so when the chronic conditions are concurrent.

As a family member, how does this play out for me? Your outcome experience will be different than mine, but what I’ve learned is that I’m not going to ever get back the person I use to know. There are pieces of that person still there. I see those surface often, but the whole of what they once were isn’t who they are now or I believe ever will be again. It inevitable that family will grieve this loss, however a part of the healing needed in the family is the ability to embrace this change so that the new person can be accepted. If family or individuals always dwell in what used to be, healing for the patient and family can’t progress.

In that last paragraph is the seeds of what “healed” or “recovery” really looks like for people that have a substance and/or mental illness.

There is a very strong possibility that your loved one will recover. Long term stats and research gives us this hope and reality that there can be a “successful” outcome. However, recovery isn’t cured. It’s almost always defined as their condition will be controlled. There is a huge difference in the word “successful” versus our expectations.

Also, don’t forget that your understanding of recovered might be different than your loved one’s. Recovery also includes small steps towards a goal. Do my goals match my loved one's goals? Where is my loved one in their journey? There is no real endpoint when you think about it, just progress. Often progress can be stagnant or seem so for years.

Our expectations as families need to accept that recovery isn’t the same as cured and looks different for everyone. Recovery is significantly different than cured. We need to encourage professionals to have this difficult discussion with patients and family sooner than later and to revisit it often. Setting real prospects helps in several ways.

It helps families and patients understand long term realities. This sets the foundation for the understanding of the chronic nature of a substance and mental illness. Understanding leads to acceptance and for families creates the conditions necessary to keep connected with their loved one. Connection provides hope, both for the patient and the family. Hope, particularly for the patient is the basis for actively entering into the journey of healing.

Everything I’ve said so far is tied to the notions we have for our family member’s future. Often the concept of who they are is directly linked to the dreams we envisioned that they’d become. A doctor, engineer, lawyer or some other significant contributing member of society. As they grow, we can set aside some of those aspirations for them when we find out they’d rather be an artist or musician. Even a stay at home mom or dad. Do you see what I mean? Our bias comes out in subtle ways. Many of us carry this bias unconsciously. We’d never admit that a teacher is better than being a musician, however deep down we may hold these beliefs as fact, usually because of the worry of a regular paycheque associated to one vocation verse another. As we gain wisdom with age, we understand that a stay at home dad is every bit as good as an artist or doctor. The point is that all these concepts have one basic principle in them. A stable contributing member of society. For some reason, happiness doesn't often enter into our idea of success.

Most of the time, it will take many years for someone suffering from substance or mental health to achieve stability. Often what they do will be so significantly different than what we believed their potential was, that we often have difficulty coming to terms with it.

That is our problem, – not theirs. A very significant part of our concept of recovery for our loved one is coming to terms with who they are and how they may choose to live their lives in recovery. Some of us have serious difficulties with the life choices of those we love at the best of time. It’s multiplied a hundredfold when a substance or mental health illness is involved. However, coming to terms with the fact that this is entirely out of your control is the first step in understanding what “healed” means for the person in your family.

In the end, recovery may be as simple as them being healthy and happy. That would be their greatest recovery achievement and is a healing definition family must come to fully support.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4326568/

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Author: Ron Merk – Ron advocates for people with substance and mental illness 

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