In our story collection and book, Behind the Wall: The True Stories of Mental Illness, as Told by Parents, the parent-contributors offer advice and talk in-depth about the emotional journey—rife with grief— that defines their experience advocating for a child with a persistent mental illness. As heartbreaking as it is to watch their diagnosed child suffer, parents also acknowledge the pain their “well” children endure. At almost every speaking engagement for our book, we are asked, “What about the sibling(s)?”
Parents tell us that their children, who are the siblings of a chronically mentally ill person, grieve deeply. There are several sources of a sibling’s grief. Shifting dynamics within the family is a significant factor. In a typical scenario, a very ill child with immediate and all-consuming needs hijacks parental attention while other children are inadvertently ignored. Parents typically focus on the child who constantly gets into fights, has run-ins with the law or is abusing substances. Meanwhile, a sibling may be quietly suffering without acknowledgment. Kids need to know a parent is emotionally available, which is not necessarily the case when another child is in crisis.
Though one child’s emotional health may be the most grave, all children need support. In fact, the whole family unit needs support. But sadly, grieving parents, who are also in triage mode, may be temporarily incapable of recognizing and/or providing for the emotional needs of their other children. Parents admit they were even unaware of their own grief while experiencing it. Most worrisome is that a young person’s unchecked grief can develop into more serious health issues later.
Such was the case for Kerri, whose son, Tomas, is prone to rages. When he doesn’t get what he wants, she says, he threatens to break things and then does it. His behaviors ruin special times for her daughter and make it uncomfortable to have houseguests. Kerri says her younger daughter had “enjoyed the time when Tomas was away at college. She had felt free to bring friends around, not worried her brother was going to do something weird” (qtd. in Widdifield and Widdifield 44).
Tomas’s all-consuming illness draws attention from his younger sister’s needs due to his demands, anger, and the way he often puts himself in harm’s way, creating one crisis after another. Tomas’s destructive behaviors and the resulting stress in the home, Kerri believes, have affected her daughter’s health.
I’ve always felt he’s ruined things for his younger sister. Here we are, trying to look at colleges and had planned a whole weekend… Our daughter, who’s a great kid and good student, was having health problems, and I always wonder if it was connected to the stress of her brother’s illness and all the uncertainty he has caused. She was first diagnosed with Lyme disease then later with chronic fatigue syndrome with fibromyalgia. We’ll never know her diagnosis for sure, but she became depressed from not feeling well, always feeling tired and run down, and it finally got to her. (qtd. in Widdifield and Widdifield 47).
When Tomas is at home, Kerri says, the family often feels as if they are “walking on eggshells.” Their home is not always a place of calm and peace because of Tomas, clearly not an environment conducive to entertaining friends much less healing.
In another scenario in which parental attention is diverted to the child who is acting out, siblings may subsume their own problems for fear of causing their parents more heartbreak. But unaddressed or unresolved emotional issues can bloom into larger problems. Still, other siblings use the shift in attention to engage in risky behaviors while remaining under the diverted radar of parents who are emotionally and logistically consumed.
Grief also derives from siblings feeling that they have “lost” their bother or sister to the illness. A person with a brain disorder often suffers cognitive (and personality) changes that may be permanent. Sometimes there is memory loss. It is bewildering to all family members and siblings that their brother or sister creates so much trouble and refuses to follow basic rules they once could understand; or that behaviors that are not tolerated from any other family member are excused for the “ill child.” Children are understandably angry with a sibling who creates unnecessary drama and seems to ruin every family event—from birthday dinners to vacations.
Sadly, a young person can’t often escape the impact of their sibling’s behaviors through supports outside the home, either. The stigma of mental illness means that a loved one’s health challenges are not usually disclosed to extended family or close friends for fear of being judged or, as one parent says, because others “can’t possibly understand what I’m going through.” Parents know that because of the bad (sometimes bizarre) behaviors of their child whose illness may be undiagnosed or under-treated, their parenting is scrutinized by those who don’t understand mental illness. Other family members are scrutinized too.
Esme, a parent-contributor says that her daughter, Laura, suffered directly when attention became focused on Jennifer’s chaotic, raging behaviors caused by her mental illness. Laura, a naturally easy-going and upbeat person, was banned from the home of a long-time friend by his parents who believed she would become like her sister, Jennifer. Not only did the community conflate Jennifer’s behaviors with Laura’s, but also Laura’s emotional needs were subsumed by her sister’s volatile, demanding behaviors. Being misunderstood in one’s community is hurtful, especially for young people. About community judgment Esme says,
I was hurt, but there was no action I could take other than console Laura who had by then been affected more than once by the community because of Jennifer’s behavior. That’s what stung the most. At that time Laura was starting to experience depression, which was also crushing. We definitely never intentionally ignored her, but we did ignore her because we missed cues that could have informed us of her well-being, and we shouldn’t have. It was accidental because we were focusing 98 percent of our attention on one child. (qtd. in Widdifield and Widdifield 37).
Growing up with a sibling or any close family member known for disruptive behaviors can lead to feeling isolated from one’s community. This isolation compounds the grief of “losing” a loved one to a brain disorder, especially when friends and community don’t acknowledge loss or recognize support is needed. A brain disorder, as many know, is not a “casserole disease.” Yet, all loved ones, including the person living with mental illness, suffer from a loss the relationships before the illness became symptomatic. As Bianca, a mother we interviewed astutely observes,
When a person has a brain disorder it’s traumatic for the family, like experiencing a death. If Miguel had been in a car accident and had brain damage, everybody would have enfolded him. The loss [his brother] Arturo felt about Miguel’s illness affected him the way I felt the loss and hurt of my divorce: if the man had died, I’d have gotten a card. Flowers at least. You are left with pain and grief that no one acknowledges. (qtd. in Widdifield and Widdifield 226).
Still, it’s important to know that families can heal and recovery is possible for a person living with a brain disorder. The grieving process represents progress, allowing for a “new normal” to bloom. Families of a person with serious, chronic mental illness are forever changed but they don’t have to remain broken. First, parents need to take care of themselves in order to support their children. Parents like Esme also recommend spending one-on-one time with each child to strengthen the parent-child relationship. Though creating that “normal” one-on-one time with other family members requires some work at first, it doesn’t have to involve complicated plans. Says Esme,
I’ve been learning to have balance and spend more time with Laura when her social schedule allows. When she was taking driver’s education I’d spend time in the car with her. We take moments. “Let’s go have dinner, just you and me.” Or, “Let’s go driving for an hour and stop along the way and go into shops . . .” Anything to steal a moment so she feels connected. (qtd. in Widdifield and Widdifield 37-38)
Even as adolescents and young adults rebel or seem to rebuff parental attention, children do need time with their parent(s). As another parent recommends, find something, anything that your child likes to do and share that activity. “Maybe it’s crochet,” he says. Many families do find fun activities that involve every family member to help heal relationships and reach a ‘new normal.’ Activities can be simple, such as hiking, biking, playing a board game, working a puzzle together or watching a movie at home. Start with something small if that’s what it takes.
Siblings need time to heal from their own journey grappling with “losing” the sibling they knew, escaping the chaos the illness creates in the home and/or accepting their loved one’s mental illness. Siblings may escape or lose regular contact with the family for short-term or long-term. In some cases, the sibling relationship becomes (or is deemed) irreparable, even toxic for one or both persons. For others, siblings come to an understanding and may even be drawn closer. Having shared joyful, meaningful early years together can determine the long-term relationships between siblings and those who understand mental illness, usually become in awe of their loved one’s strength to manage it.* Many siblings we met became the compassionate, adult healthcare advocates, managing their own journey loving and supporting a person with a chronic brain disorder.
No matter what the scenario, the journey of the person whose sibling lives with a serious and chronic mental illness must be acknowledged.
We recommend finding support at your local National Alliance on Mental Illness (NAMI) affiliate and participating in the free twelve-week Family-to-Family course to learn evidence-based information on mental illness, how to communicate with your loved one and about healthy self-care. NAMI was a resource many parent contributors found to be helpful in their journey.
*For an example of sibling compassion and understanding, please see our March 20, 2014 guest post from Michael Ross about his sister Michele, Eulogy for Michelle: Defining the Success in My Sister’s Life”
If you would like to share your story, please connect to us privately through this website or private email at: mwiddi [at] yahoo.com. Identity of contributors remains anonymous to protect family members.
Of course, we welcome any comments:
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Our guest blogger is writer Michael Ross. His sister Michele lived with bipolar disorder and substance abuse. Over time, the side effects of the medications necessary for Michele to function took their toll. In his eulogy for his sister, Ross makes sense of what her much too brief life meant for him and her loved ones.
While my sister Michele was deathly ill and in limbo, I was struggling to find a way to think about it. My wonderful wife Markie, who has helped me immeasurably with Michele, out of the pure conviction of her belief system said something like, “I think her soul is waiting to break free. And after that happens, she’ll be purely Michele without all the burdens.”
In that moment I felt a sense of release. The situation remained crushingly sad but now it was fitted into the context of nature eventually taking care of us all.
To honestly and righteously celebrate my sister, I turn to the soul of the girl. And to do that, we have to jump back into the 1960s…
Michele was the first person I ever knew who was truly avant guard. Creativity flowed through her. It was “stream of consciousness” in nature. In 1966 when she was fifteen, she won an essay competition and was invited to read her work in front of the congregation at our Temple— Temple Beth Hillel. It was called, “Fairytales in the Grass— a surrealistic sermon.” This was the moment I learned she was avant guard, although I didn’t know what that meant back then. While Michele was on the pulpit spinning her psychedelic metaphors, I sat next to my dad who seemed to have restless leg syndrome. The poor guy was unsettled by the force of what she was saying. I was too young to get her story, but I knew there was music in her words. She finished by quoting the end of the Diary of Anne Frank where Anne says, “In spite of everything, I still believe that people are really good at heart.” There was complete silence… then a stirring in the congregation at which time my dad issued a one-word critique under his breath: “Jesus.” But after the service he was met by a wave of people, a lot of whom were his age and were genuinely moved by his daughter’s speech… And “Jesus” turned to, “Thank you very much.” I realize now he was completely flummoxed. Because she was avant guard.
In her high school years she played piano, guitar, wrote songs. One of them seared itself into my memory. I’ve remembered the first verse my whole life:
Frankenstein’s in the womb of the mothers of invention. He’s silent and still as the luminous rays. As the sun piercing through my eyes to my brain. Telling me there’s no rain.
Now, I still don’t know what that means. But I do know that in 1967 it was as arresting as the song “White Rabbit” by the Jefferson Airplane. At this time, along with being avant guard, Michele started an alternative spiritual journey from being the girl who was bat mitzvah at Temple Beth Hillel to the relentless Hare Krishna chanter in her room. All night, “Nam yo ho renge kyo.” And then early the next morning, I’d hear her quick footsteps to the front door. She’d open it and look outside at the empty curb in front of our house. She had not been rewarded with a car. So then, back into her room. “Nam yo ho renge kyo…”
In 1969, Michele went to college in Arizona and certain trappings of being avant guard, namely, drinking and taking drugs, overtook the creative part of being an artist. And here’s where I mourn. If she’d applied study and technique to her wellspring of talent, Michele might have become… you could fill in the rest of that sentence in so many ways. But this is where we have to re-calibrate what was success in the life of my sister. And see that her soul, which became weighed down more and more, always tried to find new ways to show itself.
After living in Portland for a number of years, she moved back to Los Angeles in the summer of 1976, admitting that she had addiction problems. A cycle began of staying sober, slipping, rehabbing, slipping. My mom and I wrestled with this new notion of “tough love.” Louise attended to Michele and advocated for her. I’m not saying theirs was the healthiest of relationships, but by God, my mom was steadfast and remained so, as it became clear that Michele’s problem was more than addiction and now included the diagnosis of bipolar disorder, which brought a much heavier challenge. But through all of this, Louise and Michele had a life— dim sum lunches, going to their favorite coffee places, bonding over my familial shortcomings.
Lucky for me I married Markie and we have our beautiful children. They were a tonic for everybody. Michele showed her sweet soul with my kids. When they were little she was “Aunt Michele,” who always made them things and was always interested in what they were doing. They didn’t spend a lot of time together, but my girls loved her. And when they got older, although Michele never explicitly said this to them, she once told me that she hoped her mistakes would keep them from making the same ones. I remember the moment I conveyed this to Kate and Daisy. I was proud of Michele. Proud of my big sister.
Success for her was in the work she did at TobinWorld, this wonderful school for developmentally disabled children. A couple days a week she made them lunch— hamburgers—which she did great her whole life. While the job may have at first been a kindness offered to her, the staff came to truly appreciate Michele. Because the kids loved her. Because she loved them and she’d say, “I get a kick out of ‘em.” She also found success in her work at the dog shelter where she volunteered, grooming and playing with dogs. Like with the kids, it was a pure connection. Most people love dogs. Nobody loved them more than her.
When our mom died in 1997, I became Michele’s conservator. Now that was a weird deal for both of us. Challenging for both of us. It’s not the natural way of things. But, it wasn’t without its humorous moments.
Some years ago, along her spiritual journey, Michele turned for comfort, unfortunately, to the televangelists. I’d give her spending money for lunches with her friends, for movies, Starbucks, and for cigarettes. Periodically, she’d ask for more money more often. When pressed, she’d admit it was for the guys on TV, that sending them twenty-five or fifty dollars seemed like a pretty good deal for getting into heaven. We’d debate this for a while. She’d make her points. I’d make mine. And finally, we would arrive at the same place. I would say, “If you’re gonna buy your way into heaven, you’re gonna do it with your cigarette money.” I’m proud to say she’d always pick tobacco over Pat Robertson.
Now… as I write this, at this point I’m feeling stuck… how do I close out a tribute to a life that seemed too soon to end?
I want to tell you guys, my family, my cousins, that while Michele couldn’t connect to all of us in a way that felt substantial… she was connected to us, in her own way. She always welcomed news about all of you. She always wanted to tell me when she had spoken to Aunt Ruth, or Chris, or Evelyn. She always enjoyed saying that they sent me their love and regards. And she always would tell me when she sent my regards back. Her life was hard work for her. It was often hard work for me. But, with maybe more objectivity than I had while I was her brother/conservator, I can see and appreciate that until recently, Michele was always trying to move herself forward.
In the days since she died, I’ve been listening to the 60s channel on satellite radio. The 60s were her time, and that music connects me to what I remember as her essential self. So, while I know what she was hoping would be her reward, here’s my version of it… It’s 1967 and she’s going to San Francisco with flowers in her hair.
For the last twenty-four years, Michael has been a writer/producer for network television comedies. Prior to that, he was an actor. Prior to that, he and Michele played guitars and sang together.