Addiction affects approximately 23 million Americans. Those grappling with this chronic brain disease, in turn, affect some 120 million others – the parents, siblings, spouses, grandparents, aunts, uncles, children, in-laws, significant others and close friends of those who struggle.

To raise awareness about the family side – not as a competition for which side has it worse – but rather to illustrate the complexity of the family disease of addiction and the profound impact on all concerned – is today’s guest author, Marianne Burke, whose daughter is in recovery.

Marianne is one of the co-founders of Change Addiction Now – United We C.A.N., an organization founded by 10 women to educate, empower and embrace family members whose loved ones struggle with this disease. Marianne welcomes you to contact her via email, marianneb@changeaddictionnow.org, and to visit UnitedWeC.A.N. (ChangeAddictionNow) on Facebook.

Sharing the Family’s Side of the Disease of Addiction by Marianne Burke

Much of my story is repeated every day in communities across the United States because the disease of addiction has reached epidemic levels. My story may have started earlier in my daughter’s life than in some other families, but just as in other families, we had years of trauma and dysfunction as our child struggled with her disease

My daughter started with self-destructive behaviors in high school, including heavy alcohol use that quickly progressed to other drugs, pills, and eventually heroin. She spent five months in rehab during her senior year in high school, where thankfully she was able to take online classes and was then able to graduate with her home high school class. At her high school graduation we naively thought the worst was behind us.

After that first inpatient treatment, my girl went to Intensive Outpatient Treatment (IOP) but we quickly realized that it was not helping with her recovery. At IOP my daughter met people who were court ordered to treatment and they were not there because they wanted to recover. Instead they shared their drugs with my daughter who continued to spiral out of control and this left us petrified that she would overdose and die.

When parents are faced with this type of situation what are they to do?

My daughter’s father and I are well educated and researched and read everything we could find on the topic of addiction and recovery. We did not know how to help our daughter so we hired a highly recommended professional to help us decide what to do next. We paid a large fee to have the specialist investigate our daughter’s history, go over her records, and with that, identify the way to help her. The consultant came back with the recommendation to send our daughter to a wilderness camp experience. She would live in a tent in the mountains during the winter for several months, far from civilization. We searched our souls and could not do that to our daughter, as she hated camping to begin with, and it just didn’t feel right to us. Looking back on it, we are still confident that it was not the right placement for our daughter. Even if we had known what the next few years would hold for us, we would not have sent her to that wilderness experience, as we worried about the trauma and feelings of abandonment she would experience. This is not to mention that she flat out refused to go.

Instead, we spent the next four years struggling with her and her substance use. We sent her to detox hospitals, addiction treatment facilities, psychiatric hospitals, and sober houses – 19 in all. In between those treatment experiences, we let her try to live at home and go to specialized psychiatrists and therapists to help her overcome her-self destructive behaviors.

During that time she survived several overdoses (two while in treatment), had an arrest for possession (which thankfully was dismissed) and had experiences that were beyond this mother’s ability to understand or accept. When she was in treatment the family had respite from the chaos. When she was home the family lived with the confusing and frustrating behaviors that are typical of people with the brain disease of addiction. Thankfully we became educated and knew that it was the disease that manifested in behaviors of almost compulsive lying and stealing. We had to question everything she said, had to lock up anything of monetary or sentimental value, and still had to make trips to the pawn shop to try to find missing items. Her behavior during this time was classic behavior of someone who was desperate to get what she felt she needed to survive – something very hard for families to understand much less accept.

As the mom I did all I could to help my daughter and other family members that were hurting so badly. The trauma and dysfunction at home affected my work, and as I look back on it, I appreciate the colleagues who supported me with compassion. Also, I appreciate those who did not know what was happening to me but still accepted that something was going on and that I needed support. Those who knew the details tried to understand but unless one has actually gone through this type of insanity they cannot understand. I remember at one time thinking some people in my workplace, social circles and extended family resented it when I talked about what was going on with my daughter. I never tried to hide that my daughter was very sick and that it was taking a toll on me. My bosses had to know – sometimes I had to leave the office at the drop of a hat to deal with situations.

The fear of my daughter dying was with me constantly.

When I wasn’t thinking of her dying I worried what this was doing to the rest of my family. My family suffered during this time as any family would. My husband did a typically male stay-in-his-cave-thing to keep from having to face what was happening. I had to spare him much of the detail of what was going on – both for him and my daughter because there are some things a dad doesn’t need to know about his daughter. Her twin was the classic ‘good kid’ trying to make up for the trauma brought on by her sister and bearing the burden of not being able to help us or her substance using twin. It finally came out in a NarAnon meeting that the sister’s friends thought that she should be able to fix her twin so why wasn’t she? After many tears, discussions, and therapy that daughter finally started understanding she could not fix her twin. No one could.

Our son, 2 years younger than the twins, had a different sibling reaction and expressed anger and resentment. He could not understand how his sister could be doing this to our family and was livid whenever her name came up in conversation. His anger spilled over onto her whenever she was around – sometimes loudly, sometimes as a slow burn. We told him we understood his anger, but that his sister had a disease and we expected him to treat her with compassion and civility.

I continued to read everything I could on the subject of addiction, saw my own therapists, and eventually hired a family therapist to help us develop a strategy. The family therapist was familiar with our situation as she worked at one of my daughter’s treatment centers.

Talking to the therapist helped me realize that I was allowed to set and enforce the boundaries I needed to live a relatively peaceful life.

I attribute that strategy to helping us as a family turn the corner when my daughter started refusing treatment. We told her that was her decision, but we could not live with her when she was using. Her choices were to stay clean, return to treatment, or live elsewhere and figure it out on her own. She ‘chose’ to move out by refusing treatment and continuing to use in our house.

We helped our daughter move into a rooming house and it was up to her to finance her life. She lived on her own like that for over a year during what we came to call her “serial relapsing period”. She was responsible for all her expenses and had some tough choices to make. Eventually we made a deal with her that if she went back to school, we would pay her rent, tuition and transportation. So she agreed to learn a trade and earned her certificate.

It took longer than expected, and it did not always go smoothly, but in the end she was successful and we were proud of her and so hopeful for her and her future.

Then came the heartbreak of her applying for jobs, being offered a job as long as she passed the background check, but failing the background check and being refused the job. She failed because her felony charge that was dismissed and expunged still showed up on her background check. That was a big blow to her, and she began to despair. We worried that this would send her over the edge to start heavy use again, so we gave her a job – painting the entire interior of my house – one room at a time, until she got a real job. She did better than I ever imagined, and now my house looks great. It was a win-win situation. Turns out she is quite artistic, and now I always consult her before I change things in the house, particularly if it involves color.

Fast forward to now.

She is 22, and this March is her first anniversary of being clean and sober. She is now living back home, is paying rent, has a job she loves in her field of work, at one of the businesses that doesn’t eliminate prospective employees with criminal records. She seems very happy and healthy. She goes to AA meetings several times a week, visits with her sponsor frequently, and still sees her therapist on occasion. She tells me I am the best mom in the world for sticking with her through this and for not making it easy for her to continue that lifestyle.

Things are becoming calmer and more balanced at our house. Our daughters are close again and spend long hours talking. Our son and estranged daughter have reconnected and mealtimes are actually pleasant as they converse about their lives. He has gained an understanding and appreciation of what she has been through and I think respects her for her progress in recovery.

A few weeks ago the family was out to dinner and my daughter broke down in tears and told us that she was so sorry what she did to us. I told her that she more than made it up to us and that when she was going through it, we understood that it wasn’t her but her disease that was making her do those things. She seemed very relieved that we understood that she was not in control at that time. Luckily we had learned that the terrible shame she carried around was toxic and was a cause of her relapses, so we made it a point to never add to her shame.

When my daughter was in her serial relapsing period, a friend suggested to me that maybe this was as good as it was going to get. Maybe she would never get clean and that periods of being clean punctuated by relapses may be as good as it might get for her. That statement changed my life, and I learned to see our family’s cup as half full back then. I began to appreciate the hard work by my daughter in her journey toward recovery. Anything more than that was gravy for us.

What I would share with others is that it is important to never give up, to keep loving the person with the disease of addiction wherever they are on their journey, and don’t save your love only for their successes.

This is their journey, they are not their disease, and they are worthy of love regardless of how successful they are in their recovery. But at the same time, don’t make it easy for them to continue their use.

It is hard to tell your loved one that they cannot live with you if they are using, but as my daughter says now, she understands why we did what we did and is happy that we did it. She says she knows we could have lost our house if the police found her drugs there – or our car if she had been stopped with drugs in the car. Now she even suggests that the parents of some of her friends should do what we did and not let them live at home if they continue to use.

Our family is in a good place now.

I just hope it lasts because in the world of substance use there is no guarantee that a relapse won’t happen. We feel truly blessed with how far our daughter has come in her journey of recovery, and with the closeness the experience brought to our family. We cherish every day and every day pray for more days like this, and for the many families still going through similar experiences.