Stigma, in All Its Damaging Glory

There are few topics that hit as hard within the mental health community as stigma. We have entire organizations, like StigmaFighters.com, dedicated to ending stigma. There’s the #endthestigma hashtag on Instagram and Twitter. We hear people talk about stigma in society, stigma in the home, stigma in a faith community. Stigma is one of the reasons we struggle to accept our diagnosis.

Unfortunately, the stigma associated with mental illnesses is damaging. At best, it damages our relationships. At its worst, it prevents the suffering from getting the help they desperately need and, in some cases, leading to tragic conclusions. As we look at stigma from several angles, it becomes a natural question: How do we end the stigma around mental illness?

While the answers are never as straight-forward as we might like, we do know that education is a critical component. Educating people not just on the numbers around mental illnesses and their prevalence is only one part of the equation. The more people with our disorders speak out and share our experiences, the more the mystery gets removed and the more we remove the stigma around an experience that one in five American adults will experience this year.

When I speak with people who experience stigma, there seems to be an underlying assumption that the stigma comes from a place of hate or is in some way an intentional marginalization. In my conversations with people who have various views on mental illnesses, I think the problem is more complicated. I believe stigma comes from three primary places: it’s cultural, based on a lack of education, and often comes from a place of fear, as well.

Stigma Is Cultural

Let’s start with discussing the cultural aspect. Here in America, our culture emphasizes self-reliance with a “pick-yourself-up-by-your-bootstraps” mentality. It is harder to find a more concise explanation and espousal of this philosophy than in the writings of Ayn Rand, a darling of the business community. Her books The Fountainhead and Atlas Shrugged are often pointed to as explanations for why social safety nets are not only unnecessary but inappropriate and damaging to the people they are designed to help.

Also, with the rise of the internet, our culture has also become increasingly hyper-focused on metrics. Data, we tell ourselves, paints the whole picture. Once we know the data, we know how to proceed. We approach a diagnosis from the same perspective: a diagnosis is perspective and paints a clear path forward. Therefore, those who do not walk the proscribed path exactly as laid out (regardless of their limitations or true needs) are making a “poor choice,” we tell ourselves. It’s a way of absolving ourselves of responsibility for participating in our communities and caring about the people around us.

We are reminded of this last point by a popular tv show, “Undercover Boss.” Episode after episode, the CEO or the COO goes undercover in their own companies to discover what works and what needs improvement. Time and again, the boss realizes that managing by spreadsheets doesn’t account for genuine, human limitations and experiences, and inevitably, some employee who needs a small hand up gets one and rewards the company handsomely through loyalty and additional effort. While we are all responsible for our behaviors and our actions, dismissing everyone who needs help as desperate, needy, or lazy dismisses their humanity. We all need help at some point; it’s part of the human condition.

There Are Spiritual Sources, Too

Another cultural influencer is faith. In many faith communities (and I often call out Christians on this topic, but it’s certainly not limited to us!), there is a belief that mental illness is not a true illness. Instead, it’s considered a malaise of the spirit brought on through a lack of faith or acts. The sufferer is chastised for not going to church enough, or not praying hard enough, or not following through with the right heart or enough diligence on the rituals around that faith’s religious structure.

I get irate when I come up against this stigma because it sends a double message. The first message is that nothing is wrong with the individual; they are either faking their condition or choosing to feel miserable. Either way, it’s all in their head, and they just need to get over it. Secondly, to the extent that what they feel may be real, they are failing in their faith, which is often the one tenet that holds people back from the most extreme solutions to their pains. When we send messages like these to our faith communities, we hinder people from getting the help they need, and we block their spiritual growth. That’s a lose-lose situation for all involved.

Ignorance Perpetuates Stigma

As much as our culture sends these stigmatizing and ostracizing messages, a lack of education furthers them. To a large extent, this is not the fault of the culture; scientists are just now starting to understand how our brains work and how people respond under different circumstances. Breakthroughs in medical science, psychology, and behavioral economics are teaching us incredible amounts about the human brain and the human condition. Many of the findings are counter-intuitive and help explain why platitudes such as “happiness is a choice” are unhelpful for people in the midst of a depression. We are also understanding the important roles that community and relationships play in helping to combat these disorders, which make these isolating stigmas even more damaging: they cut us off from one of the key sources of help and healing.

There have been strides made in this area, which are reflected in having mental illnesses classified under the Americans with Disabilities Act and the recognition that some people need to file for long-term disability and Social Security upon diagnosis. Sadly, these strides are more like baby steps, and significantly more education is needed.

Beyond the simple causes-and-effects of various mental illnesses, we are also discovering how prevalent these disorders are. It gets harder to dismiss someone’s suffering when you know that one in four people will experience a mental illness at some point in their life and that one in five American adults will have that experience in just this one year. (More stats at nami.org.) When we don’t know these basic facts, it is much easier to look upon the suffering as isolated cases.

We also don’t have a good grasp on how these illnesses reflect in people’s real lives. When we hear the word “schizophrenia,” we often assume it’s a Dr. Jekyll and Mr. Hyde situation, when that’s not necessarily the case or an accurate summation of the experiences of a typical schizophrenic. Cases range from mild to severe for all these illnesses, with some rearing their heads only once or twice across someone’s lifetime and others facing a life-long battle of managing their symptoms.

Fear Lies at the Root

Underlying these two factors is fear. Fear of the unknown, as when we consider how uneducated we are as a society about mental illnesses. But there’s a more visceral fear, too, and it’s more personal.

What about me? We know now that many mental illnesses, such as bipolar disorder, are genetic in nature. They get passed along, generation-to-generation, although not everyone receives the gene (or genes, we’re still unsure about those details) and it doesn’t necessarily get “turned on” in everyone with the disorder.

When a family member gets diagnosed, siblings have a new reality to contend with: Could I have this, too? Similarly, parents not only have this fear but also: Did I give this to my child? Is this my fault? Spouses worry about the future of their marriages and what new caretaking responsibilities they may have.

These concerns are all valid, and often go unaddressed as the focus remains on the ill person. Leaving them unaddressed doesn’t help anyone.

Regrettably, while education helps calms fears, there is no crystal ball. Each illness manifests differently based on our biology and our experiences and gets even more complicated when we consider the possibility of multiple, co-existing or co-occurring diagnoses (such as anxiety and depression). There is no way to predict who will be ill and who won’t. All we can do is manage the symptoms that we have, and support those we love as they fight for stability and health.

As we recognize that stigma is not a choice (as mental illness is not a choice) but rather the result of conditioning, being uneducated, and legitimate fears, we can choose different responses to those around us when we feel marginalized. Rather than lashing out, we can ask questions and understand the source of the stigma. Outside of a heated moment, we can educate on the topic and share our experiences.

We can surface others’ stories, too, which not only helps us destigmatize ourselves but also reflects the variety (and strong similarity) of experiences those living with these disorders have.

Stigma doesn’t go away in a vacuum, and it doesn’t have to be the end of a relationship. Instead, it can be an opportunity to educate and draw others closer to us, and that benefits everyone.

Have you experienced stigma? How did you respond? I’d love to hear your experiences in the comments below.