How Do Parents of a Child with a Mental Health Condition Truly Feel?
There can be little doubt that the vast majority of parents will do anything for their children. It is entirely natural to want to protect our offspring and help to ensure that they have a happy and fulfilling life. However, sometimes life will throw a curve ball into the mix—and the perfect plan for raising our children is turned upside down. This was exactly the scenario in my own life. Seven years ago to this very day my daughter began her struggle with a series of severe and debilitating mental health conditions.
The past seven years have been extremely difficult, with a multitude of highs and lows. I have seen an underfunded mental healthcare system in crisis that is virtually impossible to navigate. I have also witnessed first-hand the devastating impact that deeply ingrained societal stigma can have on those who are struggling with their mental health—as well as on their family and caregivers.
Such issues, combined with a whole host of other factors, have left me exceedingly tired, but also bound and determined to fiercely advocate for those who have difficulty doing so for themselves. I have joined my daughter and written numerous articles that have gone on to be published in a variety of online magazines, such as The Mighty. We have also started petitions and created an advocacy group to help others who may be feeling lost, confused or even targeted. I have in many respects personally come to terms with the situation.
Nevertheless, I am often asked how I felt, and what I did, when I first found out about my daughter’s failing mental health. What follows is a true account of my gut reactions and thoughts when I discovered this. I believe my experience may reflect the way many parents of a child with a mental health condition might feel.
How Has It Come To This? A Father's Story:
“Lilly will need to be admitted to the residential mental health hospital.”
I looked at Lucy as she was delivering this message to us. She was a kind, pretty lady who had always shown the utmost concern for my daughter. However, at the moment her eyes were furiously darting back and forth around the room like ping pong balls. She was clearly nervous, and there was a hint of guilt stretched across her face. Of course, she was nervous! She just told us my 14-year-old daughter was going to be committed to a mental institution. Does a message get any worse? I looked at her with a blank stare. Lilly’s mother turned her head away as she stifled her tears, and my daughter Lilly stared ahead, emotionless… dead.
How did it come to this? What is happening to us? What is wrong with my baby girl? What did I do wrong? All these questions permeate my brain. It is very difficult for a parent to get to this stage and not blame himself. It is a parent’s ultimate job to protect their young. I felt I utterly failed in this task. The truth is that this has been a journey and it did not happen overnight. Mental illness had twisted and slithered through our lives for years, and now was virtually choking away our life. Lilly did not get here alone. There were so many facets to it, all jumbled together in one big mess. There was the family, the friends, work and school, the actual condition, and last but not least, the healthcare and mental health institutions we were forced to navigate through the fog. This was no easy task for people who simply did not know what they were up against.
With drenched hair stuck to my face
I stand in the middle of the road
Hands at my side
I feel the rain drip down my body
Forcing me to become wet
I’m waiting for the sun
The clouds have overtaken it
They have taken my light away
My eyes dart to the sky
I wait for the sun
Fear possesses me
Wondering if it will ever come back
The rain gets harder
And the clouds roar
But I stay still
Waiting for the sun
Because no matter the darkness
Light will always follow.
What is Mental Illness?
What does it mean to be mentally ill? What is mental illness? There is little doubt that mental illness is a very misunderstood and stigmatized condition. Would we ever ask the question “what does it mean to be physically ill?” To ask such a question would be absurd as there are so many different answers. The same holds true for mental illness.
Mental illness can take a multitude of forms, just as a physical illness can. It can be one particular condition, such as depression, or it can be multifaceted and combine a variety of facets such as depression, anxiety and mood disorders. One undeniable fact remains clear, mental illness is absolutely misunderstood and feared by the population in general and it comes with extremely negative labeling and stereotyping. As is the history with humanity, we fear what we do not understand. It is human nature. Our ultimate objective then should be to seek to understand and thus empathize with the unknown, not fear it and try to make it go away by pushing it down into the depths or through ridicule.
Essentially, mental illnesses are characterized by alterations in thinking, mood or behavior associated with significant distress and impaired functioning over an extended period of time. The symptoms will vary from mild to severe. The key point to focus upon here is “significant distress” and “impaired functioning”. When trying to understand and empathize with someone who is mentally ill, it is vital to comprehend that the intensity of their painful feelings and disorientation may seriously impair their ability to function in everyday life. According to a Health Canada report, the following points typify mental illness:
- Mental illnesses indirectly affect all Canadians through illness in a family member, friend or colleague.
- Twenty percent of Canadians will personally experience a mental illness during their lifetime.
- Mental illnesses affect people of all ages, educational and income levels, and cultures.
- The onset of most mental illnesses occurs during adolescence and young adulthood.
- A complex interplay of genetic, biological, personality and environmental factors causes mental illnesses.
- Mental illnesses can be treated effectively.
- Mental illnesses are costly to the individual, the family, the health care system and the community.
- The stigma attached to mental illnesses presents a serious barrier not only to diagnosis and treatment but also to acceptance in the community.
It is through this tangled mess that Lilly and I have been forced to navigate. Mental illness has spun its web, and we have bobbed and weaved through it, surviving and praying for better days.
Mental illness has always been a demon our family has battled. In particular, depression and anxiety have attached themselves to our family like barnacles and have embedded deep into our very being. There is a huge genetic component which accompanies depression and anxiety. It has run through my family like a locomotive, virtually smashing into every member in one way or another. Some of us have undoubtedly had it more severe than others. Also, as typifies our family, we think we can manage it, but in reality, we push it into the depths only to have it bob back up every so often to the utter dismay of all those around us. There has been a culture of not talking about our problems and just pushing them down and away. We escape within ourselves and become agitated and angered when others try to enter our world. At the same time, we resent it when other people do not understand what we are going through. We can get downright nasty and mean at times, often choosing to punish those around us by carefully constructing a wall of silence and slipping into withdrawal. Yes…you are right…those around us simply cannot win! While Lily has all of these aforementioned characteristics, she also has other conditions which make her case particularly troublesome. She has acute psychosis and will intermittently travel in and out of reality. Combine this with multiple suicide attempts and the severity of her situation is readily apparent. When she first informed me about her conditions she did so in a poem she had written with a message attached at the end:
“When the redness flows down my wrist
I watch it carefully
Seeing it drip, falling into my palm
Leaving red streams around my hand
The excruciating pain relieves me
I like the way it stings
I love the way it looks
The slits crossed…vertical
The skin separated…gone
My teeth dig in deep
Into white sand
Forcing the sand to tremble
Making it rain, turning its soft surface purple
Little pieces popping up
Leaving a circular mark upon me
It is so hot
Making me feel as if I am planted in the sun
Melting my skin
Forcing heat to be only on my mind
I feel as if an earthquake has started
My brain bobbing in my skull
Making me forget
I like the way it numbs me
Unable to feel
I like the way it destroys me
Leaving nothing but scars.”
Uhmm, I’ve been meaning to ask you this for a while.
I am always cutting myself.
I have not been happy in a long time Dad, and I’m scaring myself
I don’t want to hurt myself again
I’m just simply never happy.
I also have someone telling me to do it. I don’t think she is real. Her name is Amy.
I don’t think I can get through this on my own anymore.
Can you help me…please?!?
My heart began to race after reading those words. Sweat formed upon my brow, my nose, my face. An overwhelming sense of dread had overcome me. I had known Lily was not “herself” for a while now, but had no clue to the extent of the problem. So how does a father react to such a plea from his little girl? It was an unknown area for me. My daughter was cutting herself? She was seeing people who may not be real? What!? A sense of nervous panic embraced me.
“Jane, come here….quick!”
Jane came bounding down the stairs, obviously sensing the panic in my voice.
“What is it? What’s wrong?” she exclaimed.
I was visibly shaking now. I felt sick.
“Take a look at this!” I stammered.
Her mother read the words with sadness and pity on her face. She slowly turned and looked at me.
“What are we going to do?” she whispered.
I looked up at her. I still felt as if I was in a bad dream…dazed.
“I am going to go and get her,” I replied with resolute determination in my voice.
It was then and there I decided it was not about me, it was about Lily. I would do whatever it took to help her. I had to. Little did I know at the time what I was up against. What would follow would be 7 years of turmoil, frustration, and helplessness. It was the very beginning of my interaction with the mental healthcare system in Canada. My eyes were about to be opened…WIDE!
For those parents who are experiencing something similar please remember, it is not something you can instantly fix. What you can do however is to be there for your child and help them in whatever way possible. They are going to need you badly and you will have to be strong and become their greatest advocate. The system is very difficult to navigate and you will be receiving mixed messages almost everywhere you turn. Don’t take no for an answer. Advocate and try to understand. while moving forward one day at a time.
I leave you with a passage that Lily wrote to herself early on in her struggles. It explains what she was feeling much better than I ever could.
“I was staring into her eyes. They were overflowing with emptiness. She shone a pale white, making her look sickly-even deathly. Her brown hair was a mess with tangled ends and sweaty bangs. Her face was drenched with sweat and horror. Her mouth dropped slightly open letting air out. She was wearing jean mini shorts with dirty knees. Her tank top was black and her arms looked weak and bony. She was too thin for her body. Her empty eyes had dark circles underneath them showing how she had not been getting enough sleep. Her arms were hanging at her sides. As I studied my reflection, I knew my eyes had never looked so empty in my life. A sudden hit to the ground made my senses come back alive. The hit hurt, but not as much as I thought it would. My legs simply would not carry me anymore, they had become too weak. Maybe it was from all the crying or dry heaving, but regardless, it exhausted me. All I could see was the floor. The white tiles staring at me. With the taste of stale dry tears and sweat in my mouth, I lay on the white barren floor letting it cradle me in whatever way it wanted.”