By Casey Saylor, Member of the Anti-Stigma Project | July, 2018
In response to National Parents Day on July 22nd, the Distorted Perceptions Campaign decided to focus July’s Topic of the Month on behavioral health experiences through the lens of parents and families. We set out to explore the following questions: How does an individual’s behavioral health experience affect their family? How does stigma impact family members specifically? Can the stigma that family members receive cause them to stigmatize others? And what can families do to minimize the effects of internal and external stigma?
In a 2016 survey of Massachusetts families raising children with mental health disorders, 74% of parents reported “a direct, personal experience with stigma,” with self-blame or finger pointing by extended family ranking higher than blaming from school systems (Lambert & Brandl Denson). “We are trying to stay the course,” one parent reports in the survey. “But I always worry about how others see him. And us.” (ibid).
Maryland parents of children experiencing substance use problems reported similar experiences, identifying stigma as one of the greatest obstacles to treatment (Maryland Coalition of Families, 2016). This stigma can be “so pervasive that many family members resist seeking help for a loved one and for themselves out of fear of discrimination, shame from feeling like a failure or embarrassment from being judged by others.” (The Partnership for Drug-Free Kids, 2011). The stigmatizing experiences can take the form of losing friends, being blamed for the behavioral health disorder by family or neighbors, or having their needs and experiences discounted by professionals (Healthyplace, 2016). Stigma can also take its toll on siblings, causing them to feel “like outcasts” when they are shunned by their friends or ignored by preoccupied caretakers who have little time or energy left for them. Carol, a parent whose child struggles with addiction, wrote to The Partnership for Drug-Free Kids about her experience. “It is a very lonely thing, [being the parent of someone who is addicted to drugs].” she says. “If my child had any other disease, the people in my life would be surrounding me with comfort and support. Because my son has the disease of addiction I am left to deal with it on my own… I notice that even if I have a problem with my son that does NOT concern addiction, the others in my life still don’t seem to want to help because of, I assume, the trouble he has caused in the past because of his addiction” (2011).
Susan Noonan, MD identifies these stigmatizing reactions as likely not intentional; instead, “they usually arise because of differences in understanding what a mental illness is and how to best deal with it” (Noonan, 2017). This can lead to family members encouraging their loved one to “pull yourself together” or “get over it,” but these distorted perceptions “assume the individual has control over the illness, which is false.”
Simply educating families about what mental illness is and how it works, however, will not wholly fix the frustration, anger, stress, or resentment they may feel while coping with their loved one’s condition and the stigma attached to it. According to Healthyplace, a U.S.-based online consumer mental health community that provides information, resources, and supports, “These families are ignored at best and blamed at worst by a society that doesn’t understand their needs.” They describe mental illness as a bully that not only bosses the primary sufferer but also their loved ones, making “instability, separation, divorce and abandonment frequent family outcomes of mental illness” (ibid).
So what exactly is going on that can lead to these outcomes? Healthyplace identifies five common reactions that family members can have to their loved one’s mental illness: stress, trauma, loss, grief and exhaustion. It’s important to keep in mind that every family’s recovery journey is different, and while these reactions are common, they are not the only reactions that families can experience. Below you will see a brief description of each; check out the Resources section for the Healthyplace link if you’re interested in learning more.
Stress results when a family member experiences consistent “tension, dread and worry” due to the unpredictable nature of their loved one’s symptoms. Stress accumulates over time and can lead to conditions such as high blood pressure or ulcers.
Living environments characterized by harsh words, stigma, and watching helplessly as loved ones are bullied by their symptoms (known as witness trauma) can cause family members to experience “traumatic symptoms like invasive thoughts, distancing and physical disorders.” If left untreated, these symptoms could develop into traumatic stress or post-traumatic stress disorder (PTSD). When family members attempt (and surely fail) to control their loved one’s symptoms, their “beliefs about control, safety, meaning and their own value” can begin to erode.
During this time, family members can experience personal, social, spiritual, and economic losses, and may feel the loss of the ‘the way things were’ or the family relationships that they had before.
As with any major change in life, the onset of a behavioral health condition can lead both the diagnosed individual and their family members to experience the stages of grief. Persons going through this process are often stigmatized, however, by a culture that fails to “sufficiently acknowledge and legitimize the grief of those under the influence of mental illness.” This stigma can cause their grief to compound, potentially preventing them from moving forward.
After living in a family atmosphere characterized by stress, trauma, loss, and grief, exhaustion naturally sets in.
As you can imagine, family members experiencing these reactions may have a negative perception of themselves, their loved one, or toward behavioral health disorders in general. Challenging stigma starts with challenging our own perceptions, and family members may not even realize that they have developed these perceptions. Can the stigma that family members receive cause them to stigmatize others? Yes, just as any stigmatized individual can, in turn, stigmatize others. Stigma can beget stigma. But family members CAN choose to refocus and look again in order “to move beyond their loved one’s illness—not away from their loved one.” (Healthyplace, 2016) Here are some ideas that we’ve compiled for challenging unhealthy perceptions:
Educate yourself and others, including your support system and anyone who may be relevantly involved with your family or your loved one. Education not only includes learning about your loved one’s condition and symptoms, but also about the reality of recovery, its non-linear nature, and the healthy coping and problem-solving skills that you’ll need as a supporter (Herron, 2018). While there are classes and resources available for adults (i.e. NAMI Basics), it’s important to include children and young people in this process as well: they may not understand what’s happening, making them susceptible to self-blame and self-stigma. Adults can help children to “understand the condition and hold compassion towards the person who has it” while monitoring that they continue to feel comfortable and secure (rtor.org, 2018). Check out the Children of Parents with Mental Illness webpage in the Resources section for access to their library of educational videos on different types of behavioral health disorders, recovering from these diagnoses, and tips for self care, created specifically for young people.
Find Support from other people who also support loved ones with behavioral health conditions. This could take the form of support groups, peer mentorship, or online resources and forums. In 2016, parents of children experiencing substance use problems pointed out the need for more supports in the context of addiction. “Maryland has a history of providing peer-to-peer support to adults with mental health disorders and family-to-family peer support to families caring for a child with mental health problems. Families of youth with substance use disorders need and want similar supports” (Maryland Coalition of Families). Beyond emotional and social support, however, families are increasingly requesting help in navigating systems of care and support. “If you are applying for a benefit, seeking respite, or trying to obtain medical care, sadly there’s no ‘User Guide’ or clear pathway through the system,” says one carer (SANE Australia, 2018). Although she resides in Australia, this carer’s “four golden rules” are not country-specific; instead, they’re tools and attitudes that can be adapted anywhere in the world to keep your motivation and persistence high in the pursuit of services and supports. Follow the Navigating the System link in the Resources section for more information.
Practice Self-Care. Taking time to tend to your own wellbeing is an important tool for combating stress and keeping yourself mentally and physically healthy. This goes for every member of the family, adults and children alike.
Allow Healthy Grief and Acceptance of the situation, just like you would with any other major life transition. As mentioned earlier, individuals and families are often stigmatized for grieving the losses that can result from mental illness or addiction, stunting the grief process and limiting their ability to mourn and find acceptance. Ron, a parent whose child struggles with addiction, wrote to The Partnership for Drug-Free Kids about his experience. “We spent years hiding from our son’s addiction. We denied it, we were ashamed of it, we tried protecting him from it, if we could have disappeared we would have. That strategy served no one well. When we were able to overcome our shame we were finally able to take the first steps forward in helping ourselves and being in a place to help him when the time comes.”
Know When to Step Back. A main tenant of recovery includes self-direction, meaning that family members will likely need to change how they support their loved one in different stages of recovery. This isn’t always easy to do though, as Fred tells SANE Australia. “When Cathy got to that recovery stage, I got really angry for about two or three weeks and couldn’t figure it out. Then a lightbulb went off and I realised I was struggling with letting go. It’s a common thing with carers that I work with, particularly for older people who have cared for adult siblings for a long time,” he says. “They can actually subconsciously sabotage that person’s recovery. Not intentionally, but unconsciously. They feel that without the carer role, what will they do?” (SANE Australia, 2018). Stepping back isn’t always easy, but it can be necessary to help a loved one heal and recover.
Maintain Hope. Yes, there are likely going to be many challenges that families will have to endure and overcome when a loved one is experiencing behavioral health challenges. But in order to overcome these challenges, it is critical that families refrain from assuming what the future holds. Assumptions like “My loved one will never get better,” “I’m going to be caregiving for the rest of my life,” and “My loved one is too impaired to be successful” are not facts that accompany a diagnosis. Recovery from behavioral health conditions is possible, and the love and support that comes from families can be valuable tools in the healing process. As activist and author Tonier Cain says in her film, Healing Neen, “Where there is breath, there is hope” (2010). We need both in order to recover.
Cain, Tonier. (2010). Healing Neen. Retrieved from http://healingneen.com/
Children of Parents with Mental Illness (2018). About mental illness. Retrieved from http://www.copmi.net.au/kids-young-people/about-mental-illness
Healthyplace. (2016, March 25). The effect of mental illness on the family relationship. Retrieved from https://www.healthyplace.com/relationships/mental-illness/the-effect-of-mental-illness-on-the-family-relationship
Herron, Anita. (2018, May 9). I found my purpose. Retrieved from https://www.nami.org/Blogs/NAMI-Blog/May-2018/I-Found-My-Purpose
Lambert, L., Brandl Denson, E., & the Parent/Professional Advocacy League. (2016). Stigma: What Families Say. Retrieved from http://ppal.net/wp-content/uploads/2011/01/Stigma-What-Families-Say-final.pdf
Maryland Coalition of Families (MCF). April, 2016. Listening and learning from caregivers of youth and young adults with substance use problems. Retrieved from http://www.mdcoalition.org/BlogRetrieve.aspx?PostID=841825&A=SearchResult&SearchID=7113309&ObjectID=841825&ObjectType=55
Noonan, S. (2017, May 18). Mental illness splits families: How to avoid losing your family. Retreived from https://www.psychologytoday.com/us/blog/view-the-mist/201705/mental-illness-splits-families
Rtor.org (2018, April 18). How to address mental health issues in the family with your children. Retrieved from https://www.rtor.org/2017/04/18/address-mental-health-your-children/
Partnership for Drug Free Kids. (2011, May 18). The Stigma of Drug Addiction: How Does It Affect Families Seeking Help? Retrieved from https://drugfree.org/parent-blog/the-stigma-of-drug-addiction/
SANE Australia. (2018, April 26). Navigating the system. Retrieved from https://www.sane.org/the-sane-blog/caring-for-others/navigating-the-system
SANE Australia. (2018, April 30) People like us - Fred. Retrieved from https://www.sane.org/people-like-us/fred