Better Off Alive—Is the Stigma More Dangerous Than the Condition?

As a recent alarming essay on a popular website reminded us, many still perceive someone with mental illness as evil, dangerous, and in some cases, better off dead.

Dolores, left, and the author. via Author

Over the past decade, the rate of suicides in the U.S. has increased to 12.1 per 100,000 people. Every day, approximately 105 Americans die by suicide. Many studies believe that number is higher. There is one death by suicide in the U.S. every 12.3 minutes.

Suicide is the 10th leading cause of death in the USA.

Approximately 1 in 5 adults in the U.S.—43.8 million, or 18.5%—experiences mental illness in a given year, and a large number of people are debilitated by their psychiatric illness and symptoms.

So those are some basic facts. And they are startling and concerning. We have what many may consider a mental health crisis in the U.S. And we are doing very little about it.

Why?

Another, more insidious, crisis proliferates around this one: the stigma associated with mental illness. Those living with a mental illness must fear how they will be perceived by a society that offers little, if any, empathy.

I have worked in the mental health and addiction fields for many years, but this topic is far beyond professional for me. In fact, my career choice was probably formed when I was 16 years old and my 19-year-old sister committed suicide.

If you have a mental illness and you admit it, you may lose custody of your children, your job, and your health benefits. At a time when support is needed most, the proverbial rug is pulled out from under those who need it desperately.

Recently, a popular website published an alarming essay by a blogger who determined that her once upon a time friend was better off dead (the friend had recently died by what could have been suicide) because she suffered with a mental illness (schizoaffective disorder). The writer went on to say her friend (who was in her early 20s at the time of her death) had “nothing to live for” and had appeared to have been taken over by a “demon.” The piece went on to describe her former friend as “hopeless” and the writer expressed her relief at hearing of the death of this woman (though they had not been in actual touch in quite some time).

I am not writing this to bash that author (many have and will continue to). In some ways she has inadvertently heightened awareness around the subject of mental illness and how we perceive it as a society. My greatest concern (and belief) is that the thoughts she verbalized in her article are shared by many—possibly most. The stigma associated with mental illness and those who suffer from it is deep, dangerous, and contributes to the pain of those who experience it. It also inhibits the possibility for healing.

Chicago based actor/artist Elizabeth Hipwell knows this too well. “All I can think of is how alone I have felt in the journey of dealing with my bipolar depression,” she told me by email. “Mental illness is like no other illness. People disappeared from my life; family members judged and told me to ‘Buck up, and pull yourself out if it’ and ‘If you weren't so fat you wouldn't be so depressed.’“

She contrasted the experience of physical illness, and how those around her viewed it, with mental illness. “When I was physically ill I was visited in the hospital and driven home by loved ones; when I was in the mental hospital after having slit my wrists I didn't have any visitors, I was berated on the phone for being selfish, and I had to get home by myself by bus. I felt abandoned. I ended up back in the hospital for the same reason a few more times after. I came to a point where I had to stop expecting support from those who just weren't going to give it.”

Elizabeth concluded, “I decided to focus that energy on myself to heal. Maybe I did need to be ‘selfish’ as the naysayers put it and make myself a priority. I decided to reject the shame that they placed on me and be gentle with myself, forgive myself for being sick. I am by no means a victim and I hold no grudges. In hindsight I understand that the reaction people had stemmed from fear and lack of knowledge.”

I was moved by Elizabeth’s comment: I decided to forgive myself for being sick. How many people with physical illnesses need to go through a process of self-forgiveness because of their condition?

Fear of those with mental illnesses can be traced very far back. Even to this day, many cultures and religions still believe that behavior symptomatic of mental health problems is caused by demonic or spiritual possession.

If one perceives someone with a mental illness as “evil,” “dangerous,” or “frightening,” how can compassion and support possibly arise?

Madeline Sharples is the author of Leaving the Hall Light On, which chronicles her son Paul’s mental illness and subsequent suicide.

She shared with me, “When my cousin came to our house to review and discuss the family history my husband had been writing, he made one request—leave out the part about his father’s bipolar disorder. In fact, he didn’t want to see a discussion of any of the mental illness that permeates my side of our family.” Sharples continued, “That was proof enough for me that the stigma of mental illness still exists.”

In Leaving the Hall Light On, Ms. Sharples spoke of the many ways in which she attempted to help her son Paul accept help and treatment for his bipolar disorder. She is more than aware of the deadly nature of shame and silence. “I know what a problem it (admitting a mental illness) was for my son. He worked for almost two years for an internet service provider, and when they heard of the reason for his death his co-workers were shocked to know he had any illness whatsoever. He was a master at hiding his bipolar symptoms. He didn’t want to take his medication, he didn’t accept needed hospitalizations, he just tried to act as ‘normal’ as he could.”

She concluded: “And that is probably what killed him. If he had taken the Mayo Clinic’s advice geared to erasing stigma—admit something is wrong, don’t feel ashamed, seek and follow treatment and support, accept help from family and friends—he might still be alive today.”

I have worked in the mental health and addiction fields for many years, but this topic is far beyond professional for me. In fact, my career choice was probably formed when I was 16 years old and my 19-year-old sister committed suicide.

Dolores suffered many years with a brutal pain that will forever elude identification. Her attempts, at the time, to self-medicate left her branded as a “bad” kid. I was raised in a very conservative, Roman Catholic family where seeking help for my sister's suffering was frowned upon. Acknowledging that she had any issues at all would have been shameful. So, at 19 years old, my sister ended her suffering the only way she knew how.

And, for a moment, I was relieved. I was relieved because my sister scared me. Her pain and attempts to soothe it were ugly.

Back during the time of my sister’s death, people did not come over with casseroles and shoulders to cry on. In fact, no one came over at all. Had my sister died of cancer, a car crash, or a freak accident, I imagine support would have flowed. But, instead, no one said anything. No one came over. I remember vividly going with my mom to see a nun she sought solace from soon after my sister’s death.

“Suicide is a mortal sin,” she told my crying, grieving mother. “She can’t escape hell. She killed someone. She killed herself.”

So my mother was left to grieve the death of her child in solitude with the knowledge that, because she ended her own suffering, she would burn in hell. And, sadly, we haven’t come that far since that day.

But she wasn’t hopeless. And she wasn’t truly scary. But she was definitely scared.

For many years I either lied or never spoke of my sister to new people I met. I felt covered in that darkness—a shared, silent shame. And I learned (because of the reactions of those around me at the time of my sister’s death) that others would see me as tainted by her illness—her weakness—her sins. The stigma spread to me as well.

My sister has been gone for longer than she lived and too little has changed in the public perception of mental health issues since then, but hope emerges.

Organizations like the National Alliance on Mental Illness and Stigma Fighters work to empower individuals living with mental illness by removing the veil of shame and giving a public voice to an issue once too deeply hidden. The highly regarded Mayo Clinic has acknowledged the danger of stigma and has committed to providing education. Support for those who suffer and education for us all is vital if meaningful change is to occur.

On June 4th, I, amongst thousands of others, will be participating in the Out of the Darkness Walk in New York City. The walk is sponsored by the American Foundation for Suicide Prevention to raise funds for suicide prevention and awareness. This 16-mile walk offers a visual representation both of bringing suicide and mental illness out of the darkness and the belief that each suffering individual can make it through to the the light. Though my sister did not emerge from her dark night of the soul, it is imperative that the added burden of shame be lifted so that more of those who suffer can get through their darkest moments to a more hopeful dawn.

Regina Walker has been a regular contributor to The Fix since 2014.