My Lived Experience Helps Others Heal: Working with Families on the Path to Recovery

4
2563

When the manager of the family program I was working with offered me the opportunity to establish the Family Navigation and Support Program (FNSP), I initially turned it down. Thanks, but no thanks. As a person with lived experience (PWLE) who spent years cycling in and out of hospitals, I had avoided working in them throughout my career.

Until then. 

At the time I was working as a family recovery counselor with Family Outreach and Response (FOR), a progressive, forward-thinking agency that worked locally and internationally in advocating for recovery-oriented alternatives in mental health. FOR’s definition of “family” is broad, including both relatives and friends of the people who were viewed as struggling with their mental health. We know that if one person is struggling, everyone in the family is struggling. Families need support.

All staff had lived experience, and working there was a dream come true. But working with families was a significant learning curve for me, because most of my previous positions involved creating programs where I was a peerand could relate personally to the challenges of having mental health struggles.   

The brainchild of the FOR’s founder and director, the FNSP was envisioned as a partnership between our community agency, FOR, and a large downtown hospital with multiple mental health services. After I first declined the chance to create it, my manager agreed to a couple of minor accommodations, and I was excited to rise to the challenge of establishing the program.  

First, I started searching for other, similarly conceived projects. My research turned up little in the way of family support or navigation programs, and disappointingly none from a recovery lens. Others had the family worker embedded within the hospital or as an employee of the hospital, whereas we landed on a model where we were not integrated into it. A referral process was established, and promotional materials—posters, cards, brochures—were developed.   

Next, I had to face the trauma and fears of spending time each week at the hospital. My own story began as a child in Toronto, Canada, when I was six and my baby brother died. My mother became an alcoholic and jet-setter afterward, and when she was home, she was abusive and blamed my temper tantrums for causing all the family problems. 

I was first hospitalized at age 15 and again at 28, losing custody of my two small children. The anguish at losing my children caused a revolving door of hospitalizations. I was on welfare, homeless at times, and not one member of my family would have anything to do with me. Psychiatric treatment involved being diagnosed with bipolar and schizophrenia, and being overmedicated. Being stripped naked, physically restrained, and injected with meds traumatized, humiliated, and angered me. I never fully swallowed the whole psychiatric pill mentality, believing instead that I was having a response to my abusive upbringing. Eventually I moved three thousand miles away, to the West Coast of Canada, to heal my life amongst the mountains and ocean.

Thankfully I have a full toolbox of skills and recovery resources. My belief has always been that the road to hell is paved with good intentions and that hospital staff, those that I felt abused my rights and stripped me of my dignity, were human beings. Fortunately, I’m an actor and comedian in my other life, creating a one-woman show (“Now Who’s Crazy Now?”) about my recovery journey that I’ve performed across North America. My acting experience provided me with performance skills, one of the strongest in my toolbox. The hospital badge that opened doors was the prop that symbolized my freedom: I was staff. 

So equipped, I hit the pavement, making weekly visits to the hospital and meeting with staff. In many cases I was cold calling, knocking on hospital office doors and explaining the support services we were offering. The staffers I spoke with were excited, and I was able to build allies while I learned more about the big machine.   

During times spent in the hospital, I transformed into one of them, but my cells didn’t skip a beat in absorbing every last atrocity I witnessed. The people on the unit milling about, stiffly shuffling, were my peeps. I always looked them in the eye and flashed a friendly smile. Instant connection. But back at home afterwards, I always need to manage the triggers that pop up. 

The Power and Significance of Family Support

One thing I know as both a person with lived experience and a professional working with families: navigating the hospital can be confusing, overwhelming, and traumatizing for relatives and friends. Families appreciate the support, having someone with lived experience answer their questions and educate them about the hospital process. Giving tips on how to communicate with staff and offering advocacy services is often helpful.

The FNSP also provides families and their loved ones support after discharge, as we believe that families have more power and influence on their loved ones’ recovery than any others. So they receive one-on-one and family sessions on how to help. A variety of workshops are offered, including our eight-week family recovery education course. Its curriculum is a treasure chest brimming full of skills and tools that are meant to change and heal lives. Families learn then about the recovery model where HOPE is the cornerstone, and they’re taught a variety of communication skills to improve the connection with their loved one. It’s a lifestyle change, and sometimes difficult, but ultimately rewarding. When families learn how to create a healing environment, everyone recovers. In addition to our family narrative program, where they write about their recovery journeys, we have workshops on conflict, motivation, and mindful self-compassion.

Families usually arrive at the hospital in crisis only to find that the treatment isn’t the solution they were expecting. They are often devastated when a psychiatrist diagnoses their loved one and are told it’s a lifetime disorder, managed mainly by medication. The grief, shame, and sense of loss is often too much to bear. I let them know that I am sorry that that’s the message they received and educate them about optional approaches to healing. My lived experience disclosure usually ensures a rapid and trusting rapport. 

Along with giving families hope, we help them understand that their self-care is critical to their loved one’s recovery. Each week of our course has an exercise related to this and self-compassion

More C-words are part of the process. Change, for one, is a critical aspect of recovery. It takes time and patience, and it’s going to feel uncomfortable at times until the rewards are evident. Practicing new communication techniques involves a lot of trial and error, and we are there for our families to work through the failed attempts.  

Other important aspects of recovery—connection, choice, and curiosity—are infused into the curriculum. 

Connection is the key to a family’s healing journey. We provide families with the communication tools and skills to enhance connection with their loved one. An emotional and empathetic bond, and showing a loved one that you get what they are experiencing, allows for deeper, more meaningful relationships to develop.

Choice. There are always options and choices. Gathering information, making informed choices, and the daily decisions on how to respond to their loved one are endless.

Curiosity. We encourage families to embrace curiosity. When they say that a loved one is in denial, or that they refuse to take medication, we urge them to be curious. What does it feel like to be labeled with “mental illness”? How does society view people with “mental illness”? What does taking medication represent to your loved one? Once you identify the underlying emotion of what your loved one may be experiencing, validate them. They’ll appreciate your understanding. 

Reducing ER Visits and Hospitalizations

As a result of all this, the FNSP has reduced ER and hospital admissions significantly. It is not rocket science. When families get the support they need, when communication is improved, families heal together. Crisis events decrease in severity and number. If urgent situations occur, 911 or a trip to the ER can be averted by talking it through and collaborative problem solving.

Changes in the mental health system are slow. However, a gradual transition toward other approaches is becoming evident. Nurses and psychiatrists who have championed FNSP gave us opportunities to train and educate them about recovery, teaching them how to engage with families and work alongside people with lived experience. Graduates from our family narrative course have shared their recovery stories at events at the hospital attended by other families and staff. At one of these events the chief psychiatrist told his story of how his sister, diagnosed with “schizophrenia,” inspired him to enter the field. 

Meanwhile, on my end, radical acceptance and mindful self-compassion help me manage the unending trauma that surfaces from visits to the hospital. A gurney with restraints that I casually pass by; the big buff social worker cornering a patient, arms forcefully held behind him; the drooling woman in the blue hospital gown: their images come to me once I leave. I spent a lot of time in therapy healing from my childhood wounds. My experiences working in the hospital sent me back to therapy to focus on that aspect of my life, working once again to heal. 

The truth is that the pain and anger triggered by my work these days are permanent. They are here to stay, serving as fuel to advocate for change and support families. I do this work because I feel compelled to—because I know there’s a critical need for family support services. Models that include people with lived experience can benefit by reduced hospitalizations, and the template to establish an FNSP is simple and easily replicable in any community. 

I am passionate about my work. I know there is HOPE for everyone to heal.

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

***

Mad in America has made some changes to the commenting process. You no longer need to login or create an account on our site to comment. The only information needed is your name, email and comment text. Comments made with an account prior to this change will remain visible on the site.

4 COMMENTS

  1. Hi Elly,
    how wonderful. I wish there were more programs available to help families through all the struggles they encounter when supporting a loved one. It would have been so nice to not have to figure it all out on my own…
    I wish you the best.
    Sam

    Report comment

    • Hi Sam,

      Thanks for your comment. I have read your articles and I am so sorry that you an your family had to figure out the healing process all alone. It sucks and takes a lot longer. I had to do most of my healing outside of the mental health system, which is why I created the template for the FNSP to be simply and easy t6o replicate in any community. Take care, Elly

      Report comment

  2. I am family. In a former life and place, I was involved with Mind-Freedom, Re-Thinking Psychiatry, Open Dialogue, the Process Center, Hearing Voices, Emotional cpr, Mental Health Association, and I love the works of Will Hall (a grand rounds talk) and Eleanor Langdon ( TED talk). I got booed and hissed at at a NAMI meeting for mentioning the work of Robert Whitaker, though some nams showed up at our workshop where Robert appeared. I worked in helping kids thrown out of schools and helping to transition high-risk persons out of in-patient, as a social worker with a family-service agency. I am old enough that I felt I needed to escape south, where I find being old is an asset. Triggers just have to be dealt with, even getting attacked for saying the word “trigger” by intelligent people who could grow hearts if they would choose to!

    Report comment

  3. I really appreciate the shift in energy, to help families support their children. My sister was treated by the MH system starting around 1964? and it was then secretive, held separate from family. She was taught not to discuss life issues with her family, only to her therapist – so no-one helped her learn till years later, to excuse herself if overwhelmed, plan ahead for a backup plan, so that family could expect her to be included in family funeral without having a meltdown. So much privacy was seen as the biggest piece to protect, but I see that as keeping family members from helping family. Privacy preserves chaos by keeping parties apart or using meds to make sure that chaos does not arise – but that is a method which ignores how families care and with some support, can add structure to show that.

    Report comment

LEAVE A REPLY