‘Mental health problems don’t define who you are. They are something you experience. You walk in the rain and you feel the rain, but, importantly, YOU ARE NOT THE RAIN.’ – Matt Haig
My experience and with mental health and wounds from it stretches back generations, from schizoaffective, schizophrenia, bipolar, and mania to alcoholism to ADHD.
I grew up in an alcoholic home riddled with mental illness. Bipolar with extreme lows would quickly spiral into violent abuse. But mental health was a taboo subject. These experiences set in motion something deeper and as an adult I became what I swore I would never be, an alcoholic with untreated bipolar. I am now sober in active recovery, which allows me to be a caregiver to my daughter with schizoaffective disorder. Genetics have continued to be passed down in our family, but today the difference with our current family generation is that we have become advocates for mental health and embrace recovery on a daily basis. We actively work to change our family’s genetic line of mental health by welcoming acceptance and asking for help. It is not to say that we expect our mental health struggles to go away, but it also does not mean we need to repeat our history.
We may find ourselves questioning the impact of genetics and the environment on mental health. We may ask ourselves, did someone or something cause this? In the journey of searching for a diagnosis, it often takes a long time and multiple wrong diagnoses before the symptoms can be cleanly fit into a clear diagnosis. A range of symptoms may slowly begin to reveal themselves over time, including substance abuse, post-traumatic stress disorder (PTSD), obsessive compulsive disorder (OCD), dual diagnosis (i.e., mental health with addiction), bipolar, depression, schizoaffective (i.e., including mania), schizophrenia, and anxiety, just to name a few. But why can’t we get a straightforward diagnosis?
In less understanding environments, people are quick to call out the bad behavior and blame addiction. In addition, people impacted by mental health are told to get a job because a job will fix it, and so on. However, the truth is that many types of people have a brain disorder, including working professionals and active members of our community. No one caused this and no one is at fault. When I heard that reference, it gave me a deeper understanding that I did not cause my daughter’s or my mental health struggles, which freed me from the search to find who was at fault and allowed myself to stop thinking of myself as a victim.
In my daughter’s case, her schizoaffective was misdiagnosed for about 5 years. She was treated in her teens for anxiety and depression. The typical low and high moods of the teenage years were assumed. She began using Xanax and marijuana to help the screaming pain inside of her that she could not articulate and in an attempt to control symptoms that would change like the wind.
An interventionist/consultant, who was experienced with addiction and not completely focused on mental health, sent her to treatment center and a list of rehab programs. As we went through the list of psychiatrists, each doctor would change her prescriptions, thus resulting in entirely new medication regiments after each visit. Nothing was ever consistent, except for the fact that doctors overmedicated her with anxiety meds to act as a Band-Aid to wounds that were not yet visible. There was no solution and the cycle continued.
After several full-blown psychoses and hospital stays (i.e., 5150 and 5250s), she finally found a great psychiatrist and has embraced being medication compliant. My daughter is finally in a state of re-entry to the world and life, but only three years after the final schizoaffective diagnoses. We can no longer afford to live with a Band-Aid that is temporary because we need to work on open wounds. We have begun to reopen and clean our emotional wounds by being honest when we ask for help. However, many people face a difficult reality around hospitalizations and what I call our healthcare system’s favorite strategy: “catch and release.” I have asked myself and many top-of-the-line professionals, “when we leave the hospital, what are we supposed to do next?” In my daughter’s case, she started following her psychiatrist directions at the hospitals exit plan, which required consistent follow up and we eventually found support with a caring psychiatrist. She learned that her way was not always the best way and she began to follow exactly what her doctors said. If we take short cuts, such as stop our medications after we begin thinking that we are recovered, we suddenly find ourselves in terrible pain, psychosis and the vicious cycle starts all over again.
Once there is full acceptance and we begin taking responsibility for our condition, we found we were not alone and were actually part of a very big club of warriors just like us. We began to start talking about our experience with mental health in an entirely new light and identified ourselves as “warriors with a battle of the brain”. My daughter and I learned there is hope even when our brain does not say so. We live one day at a time and one hour at a time.
We began to get active in our respective recovery groups, talking with peers, and connecting with people in crisis to relate our story. This has become one of the most valuable aspect of recovery. For instance, I work with families in 12-week courses to teach them what is happening to our loved ones. Just like others did for my daughter and I, now I am able to be on the other side of the table and to hold hope for those who cannot yet see it. But we needed to find our tribe and they do not come into our isolation to find us. I’m a believer in a phrase that I always used to describe the teamwork needed to help my daughter as “Team Kate”. From an early age, she had an Individual Education Plan (IEP) for a learning disability. Every year I would make the teachers feel a special and important role on this team. I did the same with her mental health and explained Team Kate to her doctors, nurses and case managers that work with her. Her early struggles she had in the first grade taught me how to advocate for her today on an entirely new level.
For those experiencing crisis and struggling through uncertainty, I wanted to wrap up with this: Tough times never last, but tough people do, the bigger our problem, the bigger our future. To me, this phrase means that our troubles become our mode of transportation to a transformation. Recovery works and we have to work, work, work it.
Art and music have helped me immensely during my mental health journey and I have a David Bowie song humming in my head with these lyrics from the song Heroes:
Though nothing will drive them away
We can beat them (our daily battles) just for one day,
We can be heroes, just for one day (one day at a time).
Written By: Rachel Roe Mallon
Rachel Roe Mallon is a sober mom, advocate for mental health (daughter with schizoaffective), NAMI Trained Family-to-Family Teacher, trained Family/Peer Support Specialist, advocate for son in the LGBTQ community, volunteer with a passion to help others being a voice for the voiceless.