The mood swings, the unexplained behavior, the secrecy. Having a loved one with a mental illness can be frustrating, painful and even cause you to feel ashamed and alone.
Though mental health is no longer as stigmatized as it once was, those who deal with mental illness and their families still often feel like they have to hide their illness from others. What many people don’t realize is how large the number of individuals who experience mental illness really is. The Substance Abuse and Mental Health Services Administration (SAMHSA) reports that in 2014, approximately 18.1% of all adults in the United States had a diagnosable mental illness.1
Considering that nearly one in five American adults lives with a mental health disorder, there is an even larger number of people out there who have loved ones with mental illnesses. If you’re one of them, these stories will likely sound familiar.
When Elizabeth was 20 years old, her mother was diagnosed with schizophrenia. “Something occurred that led my dad to literally drive my mother to an inpatient psych facility in our city, where she was diagnosed with schizophrenia and treated for (several weeks). This was the first I knew of any mental illness, and it was shocking, to say the least,” Elizabeth says.
Looking back, Elizabeth realizes there were symptoms of paranoia before her mom was diagnosed. “She thought people in our small town were spreading rumors she was a prostitute, and she believed my dad’s sisters were also gossiping about her. She would call them and instigate huge fights on the phone,” says Elizabeth. “She also would call her brothers and tell them my dad was abusing her or trying to kill her. None of it was true, of course.”
Though the family acknowledged the schizophrenia diagnosis, no one talked about it. “After her diagnosis, our whole family dynamic changed in that everything was geared toward keeping Mom on an even keel emotionally,” Elizabeth says. “This included basically acquiescing to her every demand so she would never get upset, which honestly is not at all healthy for anyone, including her.”
Now, Elizabeth’s mother does discuss her illness with her kids. Still, years of dealing with the fallout of their mother’s mental illness have taken a huge toll on Elizabeth and her siblings. “It is almost impossible to simply set aside the emotional ramifications of decades of manipulative behavior, delusion and drama—what she has put on us our entire adult lives,” Elizabeth says. “Even though intellectually we children can all agree much of her behavior has been driven by her mental illness, it doesn’t change the underlying feelings of anger, and, dare I say, even contempt, we have for her.”
Elizabeth’s mother was diagnosed with dementia in 2013 and now lives with Elizabeth. “It’s extremely difficult. I limit the amount of time I spend with her because she saps my energy and introduces so much anxiety and negativity to my life,” says Elizabeth. She copes by making sure she takes care of herself too with regular exercise and paying a caregiver to come in once a week so she can get away.
“The hardest thing for me emotionally is the guilt that comes from setting boundaries with my mom, especially the limitation of time spent together,” Elizabeth says. “I continually remind myself that we are giving Mom an excellent life, living in a beautiful house with a large yard, with her own mini-library and Netflix. She is not abandoned in a nursing home, as could have been the case after my dad died, and so if I need to set limits on my time with her in order to maintain my own mental balance, so be it.”
Elizabeth feels that her mother’s illness has impacted her interpersonal relationships and caused her to be more cynical than most. “I don’t trust people easily. I never learned healthy coping skills of any kind. I lived for many years with the fear of developing schizophrenia myself because no one explained the unlikelihood of that to me,” she says. Perhaps most importantly, “I was robbed of a close, loving relationship with my mother.”
On the plus side, “I’ve had to become resilient. I’ve had to teach myself about mental wellness and how to cope. I’ve had to be very self-reliant. All of these traits have helped me achieve success,” says Elizabeth. “Also, I believe I’ve been able to really grow as a person because I realized early on I’d experienced some developmental gaps due to my mother’s ‘absence’ and I proactively addressed these in order to mature into a healthy adult.”
Her advice: “DO NOT let mental illness be the elephant in the room. Talk about it openly. Get everyone in the family therapy. Develop a support group of family members and friends who can provide practical help as well as moral support.”
Though Kati’s parents divorced when she was a baby and she was raised by her dad and her stepmother, she visited her biological mother once a week. “When I was little, they never told me she was mentally ill, so I realized on my own that her behavior was very different from other people’s,” says Kati. One fairly obvious symptom was the condition of her mother’s house, a result of her hoarding. “My parents would say she was really messy. That was the biggest euphemism ever. Her house is totally insane.”
As Kati got older, her friends were surprised that she lived with her dad rather than her mom, which created questions in her own mind. “I wondered what had happened. We had a rigid visitation schedule where we visited her every Sunday,” Kati says. The custody agreement stipulated that the visits would not take place at her mom’s house. “After awhile, it ended up being at her house. I think my dad was worried that she would take him back to court.”
Eventually, Kati’s stepmom told her that her mother had been diagnosed with schizophrenia. Finding out that her mother had a mental illness helped Kati validate her own feelings about the situation. “It’s not just a personality quirk that I should adjust to,” says Kati. “Her view of reality and the way she keeps her house is not normal. She’d go through a lot of different low-paying jobs, and she was working on a master’s degree. She had credentials, but she couldn’t hold onto a job. As a younger kid, (finding out she had a mental illness) was validation that her behavior wasn’t normal. As I’ve grown older, it has allowed me to be more understanding of her, to feel sympathy.”
When Kati was in high school, she decided she couldn’t do the home visits anymore simply because of the condition of her mother’s house. She told her mom she wasn’t going to come to her house anymore, so they started meeting in public places, like coffee shops. “That helped improve our relationship quite a bit. Being in the hoarding environment is not going to make you like someone. It’s so unpleasant,” Kati says. “To meet somewhere pleasant and normal took a lot of the negativity out of the visits.”
Kati doesn’t know exactly what treatment her mother has received, but she seems to have mostly been untreated throughout her life. “Now that I’m an adult, I’ve thought that her behavior is like someone with bipolar disorder. As I understand it, in the 70s, you could be diagnosed with schizophrenia, but you really may have had bipolar,” Kati says.
Retired now, Kati’s mom volunteers at a soup kitchen and a clothing closet, which Kati acknowledges is great self-treatment. She and Kati talk on the phone regularly and Kati and her kids go visit when they can.
Her advice: “Setting boundaries is important because (your loved one) might have bad feelings or be pretty volatile, but you are going to like them a lot better if you don’t let them drive you crazy,” Kati says. “Also, if you are embarrassed about the mental illness, don’t be, because it turns out that nobody cares or they’re surprisingly sympathetic. It’s something that we often turn in on ourselves, but nobody blames you.”
Jackie’s daughter, Alexis, deals with major depression and anxiety. She had her first depressive episode between eighth and ninth grade, but Jackie didn’t realize what it was until she came out of it. “The first time she came to me was during her sophomore year of high school. She was crying, and we just had a really long talk. That’s when I started the process of getting her help,” Jackie says. “This was coming on for a long while. She showed signs of anxiety even in third grade.”
Through high school, Alexis was able to do therapy without medication. “I think it was helpful, but the problem is you can’t get in when you really need to,” Jackie says. “The first couple years was finding the balance of how often do I get these therapy appointments scheduled for her and how do I handle it when we can’t get her in. It was a struggle. Her therapist would say she was good to go and then she’d have trouble.”
While she was in high school, Alexis requested that the family didn’t tell anyone about her illness for fear of judgment and ridicule. “The fact that we kept it quiet almost makes it harder, but our therapist insisted that it had to be her call,” says Jackie. Living in an area where mental illness is seen as weakness more than a real illness, Jackie felt extremely isolated, though she found a friend who had been through a similar situation with her child. “If you can, find a support group, other people who are dealing with something similar, so you don’t have to deal with this by yourself,” she says.
When Alexis went to college last year, the family decided she should go on medication. “When she was home, we could keep an eye on her and never let her get to the point where things got really bad. When she went to college, there wasn’t that person for her [there] and when she came home on the weekend, we could see she needed help. Her therapist agreed that she needed to go on something immediately,” says Jackie.
Today, Alexis is doing well and is very open about her anxiety and depression. She has even started blogging about it. “She made some good friends at school, and they all know what’s going on. When she is having trouble, these kids have been great,” Jackie says.
As for Jackie, her blood pressure has gone up, and she now has to take blood pressure medication, which she feels is related to the stress of her daughter’s illness. “I have also sought therapy. It’s the worry about her. What if? What if this time she hurts herself? It does get to me. Therapy is a safe place. I can say things and be honest about what I can’t say to anyone else,” she says.
Her advice: “Never give up on them. It is really easy to just turn your back and walk away. When it’s your child, it’s different, but when it’s a sibling or other relative, it’d be so easy to just not deal with it. Don’t give up on them. You just have to support them and get them as much help as you can. Give them that safe place where they know they’re not being judged.”
Written by Sarah E. Ludwig
Integrated Treatment of Substance Abuse & Mental Illness