My heart was in my throat and it did a flip-flop. For you see, we were at a well-baby visit and I had gotten a look at my toddler’s medical chart. Under Health Problems, the doctor had listed me: Mother, Major Depression.

I didn’t know what to think. Or I guess I did: Where to hide? This was 1980 and I was just 33. I also remember that the medical doctor didn’t talk to me about it during that visit. Neither did my psychiatrist talk to me about it. About it ……..means about my being a mother and my being ill with serious depression. That was to be my experience throughout the decade.

Flash forward twenty years. I was a graduate student in Southern New Hampshire University’s Community Mental Health program (2000-2003) writing my Master’s thesis titled “Serving Adults with Serious Mental Illness in Their Role as Parents: A Contribution Towards Formulating Best Practices in the Mental Health Community”. That I choose to study consumers with mental illness in their role as parents as my thesis topic is not surprising. Some of what I learned was surprising. I’ll tell you a portion of what I learned and interweave the findings with some of my personal story and observations.

Ten years ago when I wrote my thesis, most research on parents with mental illness was, in fact, on women rather than men. Twice as many women as men are caring for children. And researchers had found that the later onset of mental illness in women (other than depression) means that they were more likely to have become parents prior to a psychiatric disorder. I was already a parent when I experienced a tidal-wave of depression during my second pregnancy.

Let’s look at parenting’s additional stresses for persons with serious mental illness. One study found stresses centered in four areas: The stigma of mental illness; day to day parenting demands; managing mental illness; and custody of and contact with one’s children.  Mothers commonly feared their children would be taken away from them due to their mental illness, or that people might assume they could not care for children. Many believed they had to prove themselves fit mothers, which motivated some and discouraged others. These concerns are not idle: In fact, a 2001 report, Critical Issues for Parents with Mental Illness  found custody loss rates reported as high as 70 to 80 %!

Mothers fear losing their children through voluntary placements when they are hospitalized; through involuntary removal of children when abuse or neglect is a concern, or as a result of divorce. Even if there is contact with a child after custody loss, visitation is likely painful.

I feel as though my middle class standing protected me from serious concern that I wasn’t a fit mother, although I remained on my son’s medical chart problem list. But I had my own big doubts about my parenting capabilities, and those thoughts at times totally preoccupied me. My own mother was nearby; but she was busy caring for her mother and I just couldn’t confide in her how inadequate I felt myself to be. She, after all, had parented six children! Looking back, I would have loved a visiting nurse or parenting class.

In my case, I often coped by being angry and perfectionistic. (I was much later diagnosed with Bipolar II disorder.) Only by working harder, being perfect and keeping things under control could I fight the grinding, punishing, invasive image of myself as a “bad” person and “bad” mother. These attempts at being “good” didn’t work and only led to misunderstandings in our family. But there was work, there was home, there was family – and two parents – for all this I am grateful.

I remember being very worried about my children when I was hospitalized. What would they think? What would their friends say? It was near the start of the school year. Who would get them prepared? I learned from my daughter, who was old enough to pick up on slights, that my good friend and child care provider made stigmatizing remarks about me. I also remember that the hospital had no facilities on the “psych” unit for families with children. Before I earned privileges to go off unit, our family couldn’t be by ourselves; we were in plain sight of the staff’s eye and often had to be near people more ill and frightening than me.

Parents are concerned about effect their mental illness may have on their children’s health and uncertain of how to talk to them about it. Studies have identified factors which can help: Continuity of care and minimal disruption to home and school when parents are hospitalized; an explanation of the events surrounding parent’s illness and someone the children can trust and talk to; also programs where children can meet with other children. The unique needs of the parents must also be addressed: Continuity of relationship with supportive case workers; reassurance about the quality of their parenting; a suitable place for their children to visit in the hospital; parent support groups; an understanding of mental illness in the community, including among their own families. Parents with mental illness have all the needs any parent has: Needs for housing, transportation, and employment; for education or job training, for health care and safe dependable childcare. And access to benefits and entitlements when work is not possible.

When it’s your turn to assist a consumer in his or her role as a parent clearly communicate your own support and love. The unique needs of parents with mental illness are those needs that arise when you think of their parent-child relationship going forward successfully. Look at those needs and then look at the family’s strengths. Give plenty of practical support and lots of nourishment.