In 2005, when my 14-year-old son called me from school to tell me how he knows he should be happy and that he feels he is a fairly lucky kid but at this moment he felt like he wanted to die, I truly panicked and thought the ground was caving in.
I thought how it is impossible for these words to be coming out of his mouth. I knew in an instant I wasn’t equipped for this situation I was about to encounter!!!!
I asked him if I could take him to his doctor and when he replied “yes” I knew intuitively my son was clearly showing signs of mental illness. I sat stunned in utter silence, panicking and paralyzed, not able to believe what I was hearing. How could this possibly be? This child has everything; good health, (or so I thought), a loving family, attends a great school, friends and yet something as fundamental as to be able to feel good about who he was and that he was going to be okay in this world, was missing!
There was a wave of quiet desperation, loneliness, and frustration that washed over our family as we experienced the onset of mental illness while we trying to access services to help our son.
We had exhausted the traditional routes; family physician, youth psychiatrist, multiple trips to the hospital, outpatient support, therapist, guidance counselor. Exactly a year later, we were still spinning in the system and had not moved forward.
I will always remember that moment, etched into my memory as I realized we needed serious intervention, but I was truly unsure of what help even looked like. I had a moment of clarity and it hit me that what was even more frightening was that the professionals didn’t know what help looked like either!!!!
The stories of families navigating the mental health care and addiction system can be overwhelming, daunting, and emotionally exhausting for a parent, to find the help they require and is further complicated by ‘no clear pathway’ to treatment and an eerie silence that maybe as a parent, this onset with your child has somehow been caused by the way you parent.
It was evident that I now have had a new job…suddenly I’m a system Navigator trying to find resources to support my son’s mental health, making calls daily and doing the research.
What programs were available? What did we need? How long is the wait time? Appropriate clinical match? Model of care? Costs? Age appropriate services? Do we have a diagnosis? Are you kidding me…? How can I get a diagnosis without being able to enter the system?
Eventually, I found my way as each phone call led to the next link in the chain. My research finally led me to a therapeutic placement consultant who was able to offer us a clear pathway as she helped guide our child to the appropriate clinical fit with the utmost compassion and persistent care.
So, if you don’t know what to do next, what can you do?
First, reach out to people. Let them know your loved one is unwell and at the very least, do not hide the fact. If we do not have the courage to speak our truth, we self-perpetuate the stigma of mental illness. This is extremely important! Mental illness and addiction are “brain disorders’ not a moral failing or choice. How can we expect people to make different choices when their brain chemistry is not optimal or needs to be balanced to make different choices. Typically, mental illness lacks the same compassion and respect that is given to those suffering from a physical illness.
The Centre for Mental Health and Addiction (CAMH) in Toronto has come out with a new slogan “Mental Health is Health” and I couldn’t agree more. Let’s get this message out loud and clear because people still feel that mental illness is a character flaw
The medical and clinical community continues to treat our minds and bodies separately as if there is no relationship to each other. People still believe that mental illness is a character flaw. Wake up society; families suffer alone, confused and desperate to access the help they need, only to feel judged by hidden expectations that society imposes on us if we are having such troubles.
If you are close to someone who suffers from mental illness let them how this is not their fault and they deserve good treatment and they deserve to be happy. Tell them how much you care and that they are going to be okay, and we will figure this out together.
If the diagnosis was cancer, they would be lining up out your door with casseroles with an outpouring of love and support. Why should this be different for anyone who shows signs of mental illness?
Community support is important to lessen the isolation. Look for other families who have or are experiencing the same. What has worked for them? Consider support groups, knowledge exchange between clinicians and families with lived experience, sometimes just listening to each other’s stories and having someone be there for you can be enough to allow the family to gain their equilibrium. Look for medical models that embrace peer support and sit on Family Advisory Boards. Get involved locally and change what currently isn’t working.
And most importantly, trust your instincts! After much time and experience, I recognize that there is no right way of being able to treat mental illness, it is often complex, nuanced and there is a close interplay between the different aspects of your loved one’s life; biological, social and physical environment.
Look for models that will treat the family not the person of concern. This will ensure the most effective outcomes. Don’t forget about your other family members who may also have a hard time, trying to make sense of all the changes.
Families need to work on their own recovery as well and show their loved one that we are in this together. This will help further support the notion ‘that there is nothing wrong with me, it is just what has happened to me’.