Being the mother of a child with mental illness is a grueling job. First, being female doesn’t help. Besides usually being the primary caretaker of the child, being female in our culture can mean being taken less seriously. There’s also an assumption, rarely directly expressed, that a mom should be able to handle any family-related situation, no matter how difficult or complex. The mom also has a child with a chronic illness and the illness is “mental.” A “mental” illness, even if based in biological processes, usually carries some kind of stigma even in today’s so-called enlightened society. A parent of any child with a chronic disability knows that every day brings a new reminder of the difficulty of navigating a world that comes easily for those without the same challenges.
This caretaking job is usually 24/7. Mom is present at every moment of her anorexic daughter’s refusal to eat, when the child with bipolar disorder is melting down, or when the child with an anxiety disorder is panicking. She’s usually the one shepherding the child through the field of therapists and experts, dealing with the logistics of multiple appointments and listening to the instructions given, which may be contradictory at times if she’s dealing with multiple professionals. She has to be the child’s advocate at school, trying to achieve understanding, dealing with problems and assuring needed support services. Any moment can turn into a crisis.
These issues are similar to those experienced by a mother of a child with a “physical” illness or disability, with one significant difference. The stigma attached to mental illness makes it more difficult to talk about the diagnosis and the challenges. Moms frequently find that many otherwise well-meaning people don’t “believe” in psychiatric diagnoses. They feel that mental illness reflects inadequate limit setting. Family members and friends often don’t understand the behavior of the child. They may suggest that that the child’s behavior is the result of bad parenting; this doesn’t happen to the mother of a child with juvenile diabetes. Mom hears “Give that child two weeks in my house, and he’d be straightened out,” or “You must have done something wrong.”
Isolation can be a significant problem. Often there is stress between the parents, since they may handle anxiety differently. Mom may be immersed in action and Dad may withdraw. He may not agree with the diagnosis or the instructions of the doctor and isn’t there to be part of the child’s behaviors as frequently. He may feel neglected or left out as the Mom spends so much of her time absorbed in the day-to-day issues of the child’s care. Some friends pull away out of discomfort. Even talking with friends who are sympathetic can be overwhelming at times when she doesn’t have the energy to rehash what’s going on or the time to keep up her end of the friendship. Often, she feels it’s too burdensome to share her feelings. She can feel alienated from parents of children who are going about age appropriate lives without apparent difficulty: attending birthday parties, having friends, checking out colleges, etc.
The mother has to deal with her own emotions as well as the needs of the child. The role of mothering is central to the identity of most mothers; even mothers who work often feel themselves to be mothers first, then workers/wives/daughters and so on. The problems of the child can feel like a reflection of the failure of her parenting and nurturance. This is true even when the child’s illness is clearly biologically based. A host of feelings can come up: failure, hopelessness, anxiety, guilt, anger and loss are common. She feels out of control of her life. A sense of failure can lead to feelings of shame that eat at her, especially if she’s isolated from other mothers going through the same experience.
A mom is also frightened for her child and her family. What does the future hold for her child? Will she or he ever become a normally functioning adult? If the child is suicidal or endangered, how can she prevent this from happening? How does she handle the impact on her other children, who may feel neglected, angry, worried or all of these? How can she manage the stresses on her marriage? If she works outside her home, how does she manage that effectively? She can feel pulled in all directions.
Although mothers need support, they sometimes don’t get enough recognition from the professionals in their lives. Unfortunately, there are mental health providers who fail to communicate empathy. In maintaining professional roles (and distance), they may not offer the mother the understanding and validation she needs. Some even communicate blame, the idea that dysfunction in the family has played a significant role in the child’s condition. For a Mom already struggling, this adds fuels to the fire of self-blame. Even if this idea has merit, she’s usually doing the best she can. She can be more open to constructive guidance if she feels her efforts are appreciated.
Everyone has the same physiological response to chronic stress; stress produces physical as well as emotional reactions. We all react to normal emergency situations by changes in our breathing, heart rate, brain wave patterns, and internal biochemistry. When a stressor is time limited, our bodies return to their usual state. Ongoing stress can produce what Herbert Benson MD calls a “pathological stress response” where these physical changes persist. A mother constantly experiencing pathological stress can have more frequent illness due to a depressed immune system, depression, anxiety, physical problems such as headaches and stomachaches, and even decreased fertility. Being overly stressed can make her more likely to overreact.
Based on my work with many Moms, there are strategies that help, even if they don’t solve the underlying situation. Combating isolation is critical. A support group can be important to counter her sense of alienation. Other Moms who know of resources, strategies and tips for managing school, home and family issues are invaluable and give hope. If this kind of support group doesn’t exist, a professional, organization or even religious group might help form one. Friends can be helpful if Mom can reach out and let them know how to be helpful, whether by providing emotional or logistical support or simply time out from worrying. Mental health providers working with the child should communicate empathy and understanding; parents can feel less defensive and more open to change. The feeling of distance or even blame only intensifies the stress and the reactions to stress that are detrimental to all involved.
Therapy can be important in bringing together parents, or parents and children, in a constructive way. Marital therapy can help address the differences in roles and perceptions between the Mom and Dad. It can help him understand the illness if he doesn’t and take a more active role so the mother is less burdened (and resentful). The parents can become a team. Family therapy can validate the feelings of siblings, and address family issues exacerbated by having a child with such strong needs. Therapy for the mother can help her with self-blame and provide a more balanced understanding of the situation.
Moms often put their own needs last on their “to-do” lists; they are often “running on empty.” Outside activities that refuel her, such as exercise, yoga or music can be a break, give some pleasure, and a sense of having a part of life independent of being a caretaker. Mindfulness meditation can lower the baseline level of stress and diminish the ongoing level of the stress response.
Having worked with the hundreds of mothers I’ve seen in my 25 years of practice, unfortunately what I’ve described here is commonplace. I’ve seen them worn down and in tears when they feel someone “gets it.” I’ve seen Moms who feel helpless and hopeless about having life improve. Some respite services are now available, but unfortunately, many mothers hesitate to be open about their needs. They fear looking inadequate or out of control. One Mom used the image of a duck to express how she felt: from the surface it looks like it’s gliding along, but it’s paddling furiously underwater. It’s important to remember that Moms in particular need the encouragement of families, friends and professionals to meet their own needs, to have stamina and the calm to persevere.
Marcia Eckerd, PhD is a therapist in private practice in Norwalk, Connecticut. She may be contacted by phone at (203) 299-1331 and by Email at firstname.lastname@example.org.