There’s one sad truth in lifeElla Wheeler Wilcox (1850 – 1919)
I’ve found while journeying east and west
the only folks we really wound are those we love the best.
We flatter those we scarcely know,
we please the fleeting guest,
and deal full many a thoughtless blow
to those who love us best.
I have experienced many demoralizing and painful incidents because of my bipolar disorder; loss of my children for a few years, rape, permanent loss of employment at the young age of fifty-two, and bankruptcy to name a few. However, nothing has been more difficult than the severing of all ties with a close family member (whom I will refer to in this blog as Chris). In retrospect, the falling-out was decades in the making. I had decided that the damage Chris was capable of repeatedly inflicting justified the relationship’s termination, and that simply being a family member was no reason to maintain a destructive relationship. The finality of the estrangement left me with a feeling of saudade: a Portuguese word for a sense of longing, melancholy, and nostalgia for what was or could have been.
I was living in England, far away from my family in Canada, when I was first diagnosed as having severe postpartum depression which resulted in a six-week hospitalization. It was 1991 and Chris, who was back in Canada at the time, was in complete denial that I needed a bed in a psych ward. They felt I simply had the “baby blues” that so many women experience after giving birth and refused to believe I required treatment. Chris’s disavowal was so all-embracing they told my extended family and circle of friends that my then-husband had had me committed. This was absurd, idiotic, and blatantly untrue. I was not living in a patriarchal society, hundreds of years ago, when women did not have rights or were seen as men’s appendages. My husband could not have had me committed, any more than a person off the street could have, because a doctor’s certificate or court order is required and there must also be due cause to justify such drastic measures. I think Chris denied reality to avoid the psychologically uncomfortable truth of having a loved one with a serious mental illness. This misinformation spread like a bad rash amongst the most trusted and important people in my orbit causing pain and confusion in its wake. We were off to a bad start.
Even though I was suffering from a stark depression I still had a clear mind and wondered, if I were willing to accept the unsettling diagnosis of depression, then why wasn’t Chris? Their unwavering belief in my “enforced hospitalization” appeared to be an unwillingness or possibly an inability to embrace the facts. Little did I know this was not only the beginning of my long drawn-out journey through mental illness—which would bring me close enough to the brink to smell death’s foul breath—but it was also the start of an impossibly tenuous relationship.
I can appreciate that my diagnosis was a confusing and upsetting time for Chris. Upon seeing me for the first time after my hospitalization they cried afterwards because the light in my eyes had been extinguished. Instead of believing that I was still suffering from a stubborn low mood, they raged against my prescribed psychotropic medicines telling all who would listen that they were damaging my mind and that I would only return to good mental health if I stopped taking them. Apparently, the psychiatrists were poisoning me. Over time I learned that I had to brace myself against insensitive comments about mental illness from the outside world, but it was distressing to be on the firing end of such callous and ignorant remarks from Chris. I prayed for détente, but it was not meant to be.
In the third year of my mental health odyssey, I had my first manic episode which led to my diagnosis of bipolar I disorder. Chris claimed that they accepted that I had this disorder, but the conversation was empty with a notable lack of understanding. They refused to listen to my story or acknowledge the intolerable psychic grief and turmoil that bipolar disorder had caused me saying, “It’s all in your head.” After that comment, I pledged to be closed-mouthed around them about bipolar disorder.
Within weeks of my diagnosis, they made it abundantly clear that they saw my bipolar disorder as a major character flaw, and they berated me repeatedly for being weak. Their accusations were insidious and persistent and always minimized my experience. This materialized as gaslighting, victimization, and mental health abuse which left me with quiet shame. No one who has mental health challenges wants or deserves to experience such a lack of empathy.
I often appeared very normal, which made it difficult for Chris to comprehend that I was exceedingly ill at times. According to them, I was “lazy” for taking extended periods of sick leave. I have always thought some people’s reaction to my bipolar disorder was grounded in fear, misinformation, ignorance, and stigma. Would I have been spoken to like this if I had a severe, progressive, and degenerative physical illness?
Naturally, I wondered, would the reception be any different if I were to have a serious physical illness? Many years later, I had the opportunity to compare the two when I developed painful osteoarthritis that necessitated two total hip replacements, followed by long recovery periods. The reactions to my physical vs mental illness from Chris and friends could not have been more different. I was met with overflowing thoughtfulness and gushing compassion when I arrived home after the hip surgeries. However, when coming home to a dark and lonely apartment after being hospitalized for two-and-a-half months for severe depression or full-blown mania I received little to no sympathy or understanding. The contrast between the two receptions was pronounced.
Chris—who had always disappeared like Houdini whenever I had been acutely ill with my bipolar disorder—came to stay with me for my first night home from the hospital post-surgery. Because in their mind, a total hip replacement was one of the more dreadful experiences in life having undergone the same operation themselves. This certainly wasn’t my way of thinking. In my case, bipolar disorder impacted me on so many more levels than temporary pain ever could. It affected my self-esteem, my finances, my career, my happiness, my personality, and my interactions with others; even undermining my resolve to live at times.
Chris is intelligent and not unkind which made their response to my bipolar disorder that much more perplexing. Their thoughtful reaction to my new physical ailment reinforced my belief that bipolar disorder is indeed met with stigma and resistance—even by close family members.
In trying to understand why people stigmatized my bipolar diagnosis, I had to examine my own response to mental illness. I had had many bipolar episodes in my life and experienced crushing self-loathing, personal stigma, and shame as a result. I realized I could never expect to educate others about bipolar disorder unless I changed myself first by eradicating those negative views.
Stigma exists, even with the many wonderful organizations out there trying to increase awareness these days, like Bell Canada which has spearheaded a media campaign for the last thirteen years to increase awareness by talking about mental health. We must all work in conjunction with organizations such as Bell Canada, and CREST.BD, who promote education, empathy and inclusion, to arrive at a better place.
Ending stigma also rests with our families, as the potential for good often starts in the trenches. The ad campaigns may reach the multitudes, but I believe the message is driven home more forcefully through the hearts and minds of the people we love and share our lives with. If we cannot educate our families, who have a vested interest in us, then how can we expect to educate complete strangers?
Hatred, intolerance, misogyny, racism, and mental health stigma are passed down in families from generation to generation. But, if we so choose, the family can also be the bedrock of acceptance and empathy toward those touched by mental disorders. We must somehow end the negative dialogues by making our families part of the conversation—which proved impossible with Chris. But let there be hope, as not everyone is like them. Many people are willing to learn, and help, but don’t know how to go about doing it.
Twenty years ago, when my daughter was twelve, her best friend asked if I had ever been in a padded cell or worn a straitjacket after hearing I had been in hospital for mental illness. I immediately took this opportunity to start a dialogue with my child’s friend by describing my illness, in simple terms, without evidencing any shame. Later that night, the girl’s mother called to thank me for starting this frank discussion with her daughter as the girl’s grandmother had lived with depression for decades and no one had ever had a conversation about it in their family. My talk with her daughter resulted in a family discussion over dinner about mental illness. I had educated a family of three generations that day in a way that was both organic and easy to do. I now take every opportunity that presents itself to gently educate others about bipolar disorder. We must choose empowerment over shame and challenge myths and half-truths.
We must all be participants and activists in the movement against stigma associated with mental illness which will lead to cultural change. We cannot wait for others to advocate for us but must advocate for ourselves.
Unless someone like you cares a whole awful lot,Dr. Seuss’ The Lorax (1971)
Nothing is going to get better.