Ed note: Our INANE colleague, Francie Likis, wrote this editorial for the March/April issue of the Journal of Midwifery & Women’s Health. I am grateful for her willingness to share it here.
Frances E. Likis CNM, NP, DrPH, FACNM, FAAN
I was 17 years old the first time I was hospitalized for mental illness. After that, I spent more than a dozen years on a roller coaster of getting better and getting worse. I dropped into and out of care depending on how poorly or well I felt. I was willing to take medications or seek therapy when my symptoms interfered with my life, but I stopped them when I felt better. Finally, in my early 30s, I accepted the fact that having bipolar disorder is a chronic condition for which I will need medication for the rest of my life.
The next 10 years were more stable than the years that preceded them. I took my medication every single day. I tried to get adequate exercise and sleep, both of which help me feel better. That isn’t to say it was always smooth sailing. I had episodes that required adjusting the dosage of my primary medication and, at times, adding additional medications. But overall, my bipolar disorder was fairly well controlled.
Last spring, without warning, everything changed. I had a severe depressive episode. I had forgotten how consuming and awful depression is. I was constantly exhausted; it could take hours of napping to recover from a short period of activity. My brain felt like mud. I could not think or concentrate. I did things that I usually would enjoy, that I wanted to enjoy, but I found no pleasure in them. I cried for no reason. There are no words to adequately convey the horrific and overpowering darkness of depression.
In addition to feeling terrible, I was terrified. I had convinced myself that as long as I took my medication and went to my psychiatrist regularly, I would never be that sick again. But it happened anyway, and it was frightening. I was even more frightened that I would not recover. I relentlessly repeated a mantra in my head, “You have gotten better before, you will get better again,” as if my life depended on it. And it may well have. After a few months, with the help of new medication and cognitive-behavioral therapy, I did get better. I also benefitted from a great deal of love, support, faith, and grace.
During this time, I was often so sick and tired that I didn’t have the energy to put on a good face and conceal my illness, as I had in the past. While most of my close friends knew I had bipolar disorder, I had never been completely open about it beyond my inner circle. This time, when people asked why I wasn’t myself, I told them what was wrong. While many were empathetic, others commented, “Why are you depressed when you have so much in life going for you?” or “You just need to get up and out, go exercise, think positively, etc.” I know they didn’t mean to be hurtful, but their comments reflect a lack of understanding of mental illness that is pervasive.
As I began to feel better, I felt a strong need to be more public about having bipolar disorder. I was frustrated that there are still so many misconceptions about mental illness. I was reminded, yet again, that I have been one of the fortunate ones. Frequently I see individuals who are obviously mentally ill, and I know how thin the line is between me and them, and how much of that line is simply luck. I have always had health insurance and thus the ability to access care and get treatment. I have found medications that work for me as well as wonderful physicians and therapists. I have loving and supportive family and friends.
Last June, a close friend of my sister and her husband committed suicide after a long battle with mental illness. When my sister called to tell me, I told her how sad I was that we don’t have better treatments for mental illness in this country. She told me how mad she was that mental illness is so misunderstood and uncomfortable that we are often unwilling to discuss it. One of our friends referred to mental illness as a fatal disease; indeed, one-third of individuals with bipolar disorder attempt suicide. Suddenly the idea of an editorial as testimony and a call to action was no longer optional, it was imperative. I wrote my first draft last August and have spent the months since deciding whether to publish it. I have had lengthy conversations with family and friends about the implications for my personal and professional life. Throughout this time, I have had repeated signs and increasing conviction that it is the right thing to do.
Why do I feel compelled to tell my story in this public and professional forum? First, I want to fight back against the stigma and fear that surround mental illness. Believing mental illness is shameful and should be kept a secret has to stop. People are not embarrassed or reluctant to say they have diabetes or hypertension or other common health conditions. I want to acknowledge and share my story.
Second, I stand to remind you that mental illness is widespread and the faces of those who are affected are not always the faces you might expect. I have a successful career and a life filled with family and friends, and I have a serious mental illness. And my face is only one of the millions of people in the United States experiencing mental illness. One-fifth of adults in the United States have a diagnosable mental illness in a given year, and 5% of US adults suffer from a serious mental illness that substantially interferes with or limits their life activities.
Finally, I want to call my fellow midwives and other health care providers to action. More than half of US adults with mental illness are not getting mental health care. As clinicians, we have a duty to ensure mental illness is recognized, accurately diagnosed, and treated. When women we care for have mental health needs beyond our expertise, we must help them access the care and resources they require. We have to educate patients and their loved ones that mental illness can be severe and even life-threatening. We can help remove the fear and shame about mental illness and increase understanding that mental illness is another health condition and not a special category. Each year, May is observed as Mental Health Month in the United States. This May and beyond, I hope my personal experience will encourage all of us to consider our responsibility in identifying and helping those who are suffering from mental illness.
1. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.
2. Substance Abuse and Mental Health Services Administration. Results from the 2010 National Survey on Drug Use and Health: Mental Health Findings. NSDUH Series H-42. HHS Publication No. (SMA) 11–4667. Rockville, MD: Substance Abuse and Mental Health Services Administration; 2012.