By Katherine Ponte, JD, MBA, CPRP
The mental illness label is one of the most stigmatizing. Most people with mental illness face stigma at some point from external sources, whether from friends, family members, employers or health care professionals. However, what’s even more damaging is when we internalize that stigma and start believing in the negative stereotypes that have been prescribed to us. This is self-stigma.
The emotional impact of self-stigma can often be greater than the symptoms of our illness itself. It batters our self-esteem, self-efficacy and outlook on life. The shame and embarrassment self-stigma ingrains in us can make us reluctant to talk about our condition. This can limit understanding and awareness, allowing our self-stigma to grow even stronger.
Without intervention, this vicious cycle can lead to worse outcomes for people who are struggling. Therefore, understanding and addressing self-stigma is an essential part of healing and recovering from mental illness.
The Internalized Stigma Mental Illness Inventory-29 (ISMI-29) measures self-stigma using four categories, including:
There are wide ranging consequences of self-stigma. It can be a barrier to recovery, increase depression, reduce self-esteem, reduce recovery orientation, reduce empowerment and increase perceived devaluation and discrimination, among other consequences. A study also showed a strong correlation between loneliness and self-stigma.
Many people with mental illness engage in self-sabotaging behavior because self-stigma causes them to expect failure. An example is to refuse or stop taking medication because we don’t believe it will work or that we will get better. It can be emotionally easier to handle intentional failure than trying to succeed and fail.
We may also intentionally harm or cut off relationships because we expect them to fail. Self-stigma may cause us to question the viability of the relationship, because “who could possibly like us?” As illogical as it might seem, self-sabotage may be a way to protect ourselves. The expectation of failure leads to harmful action taken to protect against further self-stigma. We may sabotage an activity or relationship now to avoid its more hurtful eventual failure in the future.
Many people living with mental illness struggle with rumination on negative thoughts. Also, we may generalize our experiences of stigma. If we’ve experienced stigma a few times, we may assume that others who do not stigmatize also have stigmatizing views about us.
Some forms of self-stigma can be life threatening. One of the most common examples is feeling like you’re a burden, that your family would be better off without you. This can lead to suicidal ideation, which is what happened to me. It’s a key reason people with mental illness withdraw and isolate. The pain or guilt can be excruciating. It can be easily triggered by remarks from loved ones like, “I have to do everything for you.” It is not uncommon for us to hear these expressions of frustration from our caregivers.
There are many ways to address self-stigma. A study found the two leading approaches to self-stigma reduction were attempts to:
These approaches can be addressed in a clinical setting, but self-stigma is often best addressed through supportive interactions with loved ones. Statements and actions from people who care about us usually have a larger impact on us, whether good or bad.
These are a few tips for loved ones to guide a conversation as they try to help us address self-stigma.
Try to Understand
Do not underestimate the power of self-stigma. Try to identify and understand its potential consequences. Assume that your loved one is experiencing self-stigma given its prevalence and detrimental impacts. Many of us are reluctant to talk about stigma, let alone self-stigma. We don’t want to admit that stigma impacts us as much as it does.
Also, consider if you may have made stigmatizing comments even if unintentionally to your loved one. Be prepared to recognize and apologize for this behavior.
Assemble facts and resources to prove that common stigma examples are false. For example, contrary to popular stigmatizing views, people with mental illness are more likely to be victims of crime than perpetrators. Self-stigma based on stigma that can be objectively disproven is easier to address than subjective sources of stigma. Talk about common examples of stigma and self-stigma to show your familiarity and recognize that your loved one may be experiencing them. You may also note common emotional reactions triggered by stigma, namely sadness and anger.
Be aware that talking about self-stigma is often more about how it makes your loved one feel rather than whether it is reasonable for them to believe the stereotype to be true. Be extremely cautious about delegitimizing, diminishing or dismissing emotions by saying statements like, “you shouldn’t feel that way” or “why do you feel that way?” This sort of statement may provoke an emotionally defensive response.
When your loved one is willing to discuss their self-stigma, you should simply listen. If there is silence or if a reply seems natural use active listening. Most importantly, empathize and validate their emotions. Engaging with peers, including conversations about stigma, can help normalize the feelings associated with self-stigma and allow for a “collaborative” resistance to stigma.
Keep in Mind
Self-stigma can persist despite recovery. Maybe it’s because we know that there is always the risk of a mental illness relapse. This possibility may leave open in our minds the fear that “stigma was right all along” if we relapse.
So how do I cope with this shadow of self-stigma? I know that just as relapse is possible, so is recovery. I take comfort knowing that I have recovered before, and I can do it again should I relapse. And having recovered before, I have the tools and the roadmap now to get me to recovery more easily. Recovery is the ultimate way to prove stigma wrong.
Katherine Ponte is happily living in recovery from severe bipolar I disorder. She’s the Founder of ForLikeMinds’ mental illness peer support community, BipolarThriving: Recovery Coaching and Psych Ward Greeting Cards. Katherine is also a faculty member of the Yale University Program for Recovery and Community Health and has authored ForLikeMinds: Mental Illness Recovery Insights.
We’re always accepting submissions to the NAMI Blog! We feature the latest research, stories of recovery, ways to end stigma and strategies for living well with mental illness. Most importantly: We feature your voices.
Check out our Submission Guidelines for more information.
Find Your Local NAMI