Solving Stigma – A Family Fight

May is Mental Health Awareness Month

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May is Mental Health Month, so the word “stigma” will be popping up on your favorite websites a little more frequently than normal for the next 31 days. And that’s not a bad thing. What is stigma exactly anyways?

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Stigma: a mark of disgrace associated with a particular circumstance, quality, or person.

Example: “the stigma of mental disorder”

Synonyms: shame, disgrace, dishonor, ignominy, opprobrium, humiliation

altPhoto courtesy of https://www.nami.org.

Conversations about stigma have become so common that people who stigmatize others with mental illnesses have themselves become stigmatized. Through social media and advocacy organizations and campaigns with famous actors and actresses as spokespersons, our society has become much more aware of mental illness in general. Even terms like “mental illness” and “mental health” have been carefully discussed and debated.1  

A Family Fight

It was surprising to me, then, to read about a study funded by various National Institutes of Health (NIH) grants, finding that families are more embarrassed by members who have a mental illness then by those who have a physical illness. The following article about the study explains that “family embarrassment may lead to the concealment of an individual’s condition and impose barriers to care, unnecessarily lengthening the duration of the condition, and thereby increasing the population prevalence, and possibly yielding more serious consequences due to treatment delay.”2  The article can be read online at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4013530/.

Actually, this shouldn’t surprise me at all. I speak to both patients and family members while taking calls for the National Institute of Mental Health’s (NIMH) Information Resource Center. 

“My family doesn’t understand schizophrenia at all. They keep telling me just to be normal and snap out of it and stop acting crazy.” “I’ve messed up a few family gatherings because I have anxiety attacks, and now I’m never invited to any family functions, not even my niece’s birthday party.” “I overhear my parents talking about my depression like it’s a drug addiction, like it’s a big family secret. My mom told my aunt that I went on a mission’s trip instead of telling her I went to a clinic for a month.” And then family members chime in, “He blames his laziness on his anxiety.” “She’s a terror one moment and an angel the next. I know it’s not all her fault, but I’m so exhausted, I can’t deal with her extremes.”

Two things have become abundantly clear: (1) It’s hard when you have a mental illness, and (2) it’s hard when someone you love has a mental illness.

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Because about 18 percent of adult Americans have some form of mental health condition,3 I’m going to assume that this includes someone in your extended family. I have a family member who has severe panic attacks, generalized anxiety, and obsessive-compulsive disorder. It was years before we accepted words like “illness” and “prescription medicine” in part because of the stigma we both felt and fueled in each other. So this topic is not only near and dear to me, but I’ve also seen the harm that can be done when families don’t fight together. We use words like “fight” and “battle” when referring to breast cancer or amyotrophic lateral sclerosis but much less frequently with mental illness despite the fact that it takes just as much strength and determination by patients and family to fight not only the effects of a mental illness, but also the stigma that surrounds it. That’s why I appreciated the concept of a blog I recently read that showed a superhero figure punching “stigma."4

Tips and Resources

I would like to provide a few resources for the mental health patient’s first line of defense against stigma—his or her family. Mental health can be especially difficult for family members who must deal with all the emotions of a loved one having an illness while pondering questions like, “Where does the person end and the illness take over? Is she responsible for her outbursts? Can she help it?” “What do I tell the neighbors when he is in treatment again? Is it okay to tell them he’s suicidal?” “Is this my fault?”

After reading through a plethora of good sites, I have compiled a short list of resources and tips for family members.

  1. Find support for your whole family, especially if family members are having trouble coping. The Substance Abuse and Mental Health Services Administration (SAMHSA) can help you find outpatient mental health treatment centers, some of which may offer family counseling programs. You can visit the website at http://findtreatment.samhsa.gov or call 800-662-HELP (4357). There are also social media outlets for family members such as online discussion groups and Facebook groups.
  2. Avoid terms stained with stigma like “freaks,” “crazies,” and “schizos.” Avoid expressions like “because you’re crazy” or terminology that implies that your loved one is less (important, worthwhile, etc.) because he or she has a mental illness.
  3. Involve yourself in your loved one’s treatment. Ask questions about medicines. Offer to accompany him or her to group sessions or therapy.
  4. Be aware of and sensitive to triggers. Family members adjust to a loved one’s diagnosis of celiac disease by making gluten-free food. In the same way, family members can help a loved one with a mental illness avoid some of the triggers that expedite the onset of a panic attack or mania or psychosis, for example.
  5. Learn. Do you understand the ins and outs of your loved one’s diagnosis? Avoiding reading about it will not make it go away. Websites like the NIMH home page and MedlinePlus are a good starting point to learn about how a mental health condition is diagnosed and treated.

The following resources from the National Alliance on Mental Illness (NAMI), Mental Health America (MHA), and the American Psychological Association offer additional tips and resources: https://www.nami.org/Find-Support/Family-Members-and-Caregivers, http://www.mentalhealth.gov/talk/friends-family-members/, and http://www.apa.org/helpcenter/improving-care.aspx.

Finally

If you have a mental illness, resources are available from SAMHSA, NIMH, NAMI, and Lifeline, to name a few. These resources from NAMI and MHA have tips for talking to your family about a mental illness: https://www.nami.org/Find-Support/Living-with-a-Mental-Health-Condition/Disclosing-to-Others and http://www.mentalhealthamerica.net/conditions/time-talk-tips-talking-about-your-mental-health.

The battle against stigma will continue to wage in social media and in schools and businesses across the country, but our homes should be a safe place where instead of stigma, family members with all kinds of disorders, physical, mental, developmental, and emotional, find compassion and encouragement to pursue treatment and live life. 

References

  1. View from the administrator: What’s in a term? Considering language in our field. SAMHSA News. 2010;18(2) Accessed April 29, 2016.
  2. Ahmedani BK, Kubiak SP, Kessler RC, et al. Embarrassment when illness strikes a close relative: a World Mental Health Survey Consortium Multi-Site Study. Psychol Med. 2013;43(10):2191–2202.
  3. Any Mental Illness (AMI) Among U.S. Adults. National Institute of Mental Illness. NIMH. (n.d.) Accessed April 29, 2016.
  4. Greenstein L. 9 Ways To Fight Mental Health Stigma. National Alliance on Mental Illness. 2015.  Accessed April 29, 2016.

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Comments

Anonymous's picture
May 16, 2016
GREAT article. I love Mental Health Awareness Month because there are so many people talking about the crying need to stop stigma. Hope everybody reads Obama's inspiring MHA Month Proclamation - and will hop around the web supporting as many MHA Month posts as they are able. (Comments & likes help posts get seen - and posts like this one are SO important) FYI: I linked this post as Related Content in my 2016 MHA Month post: The importance of a Diagnosis - Name it to Tame it. I hope you'll have some time to check it out. xx, mgh (Madelyn Griffith-Haynie - ADDandSoMuchMore dot com) - ADD Coach Training Field founder; ADD Coaching co-founder - "It takes a village to transform a world!"

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