Posted on October 18, 2022

Addiction is absolutely a family disease. Each time I am asked about the path that led me to become a board-certified patient advocate (BCPA), and why I have chosen Substance Use Disorder (SUD) as one of my practice specialties, I share our family experience with this disease. Estimates suggest for every addict, there are five non-addicts whose lives are deeply affected by his/her substance use and related behaviors.

Addiction defies logic and understanding.

“The word ‘addiction’ isn’t a proper medical term. Until 2013, the accepted medical terminology for addiction was substance dependence and substance abuse. Since 2013 it has been substance use disorder (SUD).”[i]

“In 2021, provisional data from CDC estimate more than 107,000 people died of a drug overdose, with 75% of those deaths involving an opioid. The overall rise in overdose deaths is largely attributable to the proliferation in the drug supply of illicit fentanyl, a highly potent synthetic opioid.[ii]

Opioids—mainly synthetic opioids (other than methadone)—are currently the main driver of drug overdose deaths. 82.3% of opioid-involved overdose deaths involved synthetic opioids. Opioids were involved in 68,630 overdose deaths in 2020 (74.8% of all drug overdose deaths).[iii]

Addiction is absolutely a family disease.

Each time I am asked about the path that led me to become a board-certified patient advocate (BCPA), and why I have chosen Substance Use Disorder (SUD) as one of my practice specialties, I share our family experience with this disease.

Estimates suggest for every addict, there are five non-addicts whose lives are deeply affected by his/her substance use and related behaviors.

As far as we (my husband, daughter and myself) know, our son, Jason’s addiction began at the age of nineteen. Earlier this year, our 42-year-old son died. Drug overdose was suspected. The results of the investigation confirmed his cause of death as Acute Intoxication. The toxicology report, listed his fentanyl level at 34 ng/ml. As a point of reference, blood concentrations of approximately 7 ng/ml or greater have been associated with fatalities where poly-substance (drugs that have been mixed or cut with other substances)[iv] use was involved.

During this 23-year test of strength, patience and faith, each of us became snared in his addiction, for many years attempting to “find the solution, fix the problem and make it go away.” Every step of the way, his choices, his actions, significantly impacted our lives.

My husband developed resources and skills as an investigator finding him each of the 2 or 3 times, he went AWOL while in the Navy. My daughter, 2 years younger, became a psych major, then allowed him to live with her while she finished her undergraduate degree. I took on the responsibility of navigator and advocate 3 of the 4 times he spiraled downward to the point of requiring hospitalization, detox and extensive rehab.

He had become a ghost of who he used to be.

As he self-destructed through substance use, everything he cared about – his work, money, health, sister and eventually even his daughter, was pure anguish and hell. We watched 90% of his personality change as he continued his path into addiction.

He tried over and over again to stop or control is substance use, unfortunately with disastrous and life-changing effects not only for himself and the rest of the family, particularly his daughter. With each rehab (there were 4 or 5 over the course of 19 years, we recognized only the physical side of himself.

Six years ago, I reached out to him, following his recent discharge from jail (one of a number of incarcerations that also involved rehabilitation). I arranged to meet, assuring “no agenda,” other than a visit. He was gaunt, thin in his 6’3” frame, with a guarded affect - a ghost of who he had been. We spoke for about 15 minutes, then before leaving, gave him a hug, told him I loved him.

I use to believe. . .

Addiction was a choice, avoided through willpower and making the right choices. I now know better. Through conversations with professional colleagues, I have come to understand the addict’s brain eventually compensates - reaches a point where the use of whatever substances they get their hands on, no longer creates even a little, or zero high for the use of the substances they take was taking.

“Addiction is so irrational that even addicts don’t understand it,” states Andrew Proulx, MD and former addict. As a practicing doctor I had always seen people with addictions as bad people who wake up every day and make bad decisions.” P.7 [v]

Understanding and Helping an Addict (and keeping your sanity), Dr. Proulx, MD, identifies these truths about addiction:

1. “Addiction is a matter of biology, not an issue of morality, weakness of character, or lack of willpower.[vi]

2. Recovery requires identifying and addressing the underlying causes of each individual’s addiction and healing for the effects (of the addiction).[vii]

3. Every person is capable of life-long recovery from addiction, citing addicts in recovery are, “happier and better able to function in life after addiction than they were before,. . .” after learning skills for coping with stress and anxiety in a healthy and productive way. . .”

Despite years of struggle, he never made it to recovery.

I am accomplished at navigating and advocating in the general healthcare space. Mental health, specifically addiction/substance use disorder (SUD), proved to be a different experience. Each admission occurred in an emergency room. From these experiences, I came to appreciate 2 consistent observations:

1. Medical professionals have very little training in addiction. (Verified by Dr. Proulx[viii] . . . , p.7

2. The stigma of substance abuse and addiction is absolutely real. Loved ones of the addict are:

a. Overwhelmed by dramatic and frightening changes in their spouse, parent or child.

b. Challenged in navigating through the double-pronged healthcare and mental health systems.

As substance use and abuse continues to rise, the need for effective mental health care has never been greater. Family advocate tips and suggestions, learned through the years, to provide the best possible outcome for the addict you love and care about include:

ü Know you are not alone. Seek and get help when needed. There are many, many other families living the nightmare of addiction.

ü By separating yourself from the his/her circle of chaos you are helping yourself while being more effective at helping and support.

ü Everyone within the family suffers – not only the user.

ü Anxiety and stress absolutely affect how we process information. Do not even begin to attempt doing this on your own. Designate a trusted and level-headed family member, friend or professional to advocate when you cannot.

Advocating tips on behalf of an addict. Know this is not for the faint-at-heart:

1. Be prepared. There is a good chance the advocate is noy going to be welcomed by the addict or hospital staff.

2. People in a mental care crisis do not have the capacity to hear or absorb treatment options.

3. Communication is key in all instances and situations. Especially when you’re not getting answers or updates in a timely manner or if clinicians, therapists or other professionals don’t’ seem to be listening.

o KEEP asking questions until you understand what you are hearing or reading.

o Redirect physicians, nurses, technicians and other staff members to speak directly to your family member, not over him/her.

4. Do not, ever be an antagonist to medical and mental health professionals. In all circumstances and situations communicate in a manner that is polite and respectful as you would expect in return.

o That doesn’t mean you should accept their course of action as final. If you feel more needs to be done – ask the question.

5. Take notes, especially at discharge.

6. Get your papers right away. Get copies the diagnosis, plan of care, progress notes and the discharge summary.

7. If your loved one is of legal age, ask him/her for permission (verbal and writing) for access to their medical record.

Specialized Professional Advocacy and Navigation services for clients with a drug addiction diagnosis is available. The demand for professional patient advocates in this area is beyond significant.

Independent patient advocates make a difference in numerous patient outcomes, providing guidance, navigation and assistance to bridge the gaps in care and follow up.

We reinforce education, provide ongoing support and help patients communicate with their healthcare teams.

Our goal is to ensure client needs are met and rights are protected. Independent patient advocates don’t work for the hospital or insurance company. We are part of the healthcare, medical care and mental health ecosystems.

Those of us who have earned certification as a Board-Certified Patient Advocate (BCPA) through the Patient Advocate Certification Board (PACBoard.org) have passed a rigorous certification exam and committed to the BCPA ethical standards and code of responsibility.

Questions, additional information or comments, visit: https://patientadvocatesofswfl.com or email: carolanne@patientadocatesofswfl.com.

[i] Understanding and Helping an Addict (and keeping your sanity), Andrew Proulx, MD, 2021, p 8. (addiction defined)
[ii] Percentage of overdose deaths involving methadone declined between January 2019 and August 2021 | National Institute on Drug Abuse (NIDA) (nih.gov)
[iii] Drug Overdose Deaths Remain High. Centers for Disease Control and Prevention, National Center for Injury Prevention and Control. last reviewed June 2, 2022, Death Rate Maps & Graphs | Drug Overdose | CDC Injury Center
[iv] Polysubstance Use Facts – Centers for Disease Control and Prevention. Last reviewed February 23, 2022. Polysubstance Use Facts (cdc.gov)
[v] Understanding and Helping an Addict (and keeping your sanity), Andrew Proulx, MD, 2021, p.4.
[vi] Ibid, 6. (truths about addiction)
[vii] Ibid, p. 7 (3rd truth)
[viii] Ibid, p.7

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