Back when my 14-year- old son called me from school and said he knows he should be happy and he is a lucky boy, but he feels like he wants to die, I truly panicked. It was as if I wasn’t hearing the right words coming out of his mouth. I knew I wasn’t equipped for this situation!!!! I asked him if I could take him to his doctor and when he replied yes, at that point I knew 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, goes to 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 quiet desperation, loneliness, and frustration that came along with our family trying to access services to help our son.
We went through the traditional route; family physician, hospital, outpatient support, therapy, guidance counsellor. 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 unsure of what that looked like. What was even more frightening was that the professionals didn’t know either!!!!
The stories of families navigating the mental health care and addiction system are ones that demonstrate how overwhelming, daunting, and emotionally exhausting it can be to try and find the right pathway to help.
I now had a new job…. 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 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 important. Mental illness and addiction is a “brain disorder’ not a moral failing. Typically, mental illness lacks the same compassion and respect, that is given to those suffering from a physical illness.
Let’s get this message out loud and clear, because people still feel 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. Let your loved one know that they 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?
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 others 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 instinct! 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 psychical environment.
Look for models that will treat the family not just the child. This will ensure the most effective outcomes. Don’t forget about your other family members who are also having a hard time trying to make sense of all the changes. Families need to enter treatment as well, and do their own work, showing 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’.