Helping My Daughter Through the Onset of Mental Illness
When I started working at NAMI over seven years ago, I didn’t realize I would have a direct connection to NAMI’s mission. I have always worked in the education arena, and I simply wanted a job where I could use my skills to make a difference.
My personal connection started developing two years ago when my 14-year-old daughter, Rose, sat in our family room sobbing uncontrollably for reasons she couldn’t articulate. I consoled her by telling her that it was okay to be upset, and we would figure this out. At the time, I thought it was normal behavior: this was a stage some teens go through, right?
Everything went back to normal, aside from a few anxiety-based situations (nothing I was too concerned about). Then, one day Rose told me that she sometimes couldn’t stay in her history classroom because she felt like she couldn’t breathe and had to “escape” the room. She liked the teacher and the subject, and she wasn’t being bullied.
I talked with Rose about coping skills, and made sure her teacher knew what was happening with her so she could leave the class if she needed to, but I didn’t consider help at this time. I didn’t equate this behavior to mental illness.
Realizing My Daughter Has Depression
At the beginning of her sophomore year of high school, her first real boyfriend ended their relationship and then shortly after that, she broke a finger at her third volleyball game of the season. That is when she started experimenting with self-harm.. Luckily, her level of transparency with me is very high — she showed me soon after she did it. I was shocked but also not surprised because she had told me earlier in the year that she had a friend that was cutting.
We talked about it, and I asked her: “Did this help solve your anxiety and sadness?” And I reasoned with her: “If this didn’t help, then you won’t do it again, right?”
When I talked with my NAMI colleagues, I described what she was going through as “anxiety and sadness.” I vividly recall the email with a potential therapist’s name who worked with teens experiencing “anxiety and depression.” I was stunned at that word. I work at NAMI and talk about mental health conditions every day, so why was I so affected? Why had I not used the word “depressed” to describe my daughter? After that, I accepted that what she was facing was more than just sadness.
The Search for Treatment
One day, I was at a church meeting that had just ended when I missed a call from Rose. As soon as I walked into the house 10 minutes later, she met me at the door, sobbing. She had cut her forearm and lower leg multiple times. She said she couldn’t stop herself. I felt so guilty — if I had just answered the phone, maybe this wouldn’t have happened. I knew I had to get her help.
That started our journey of navigating insurance coverage and searching for mental health care providers. There are over 900 within 20 miles of our home and 80 within five miles, and yet:
- Six practices never returned my calls.
- Three didn’t serve teenagers even though the insurance website indicated they did.
- One practice sent me through six levels of “press # for…” only to learn they weren’t accepting new patients.
- One only had openings during the school day and another was out-of-network even though the insurance company website had them listed as in-network.
It was the out-of-network practice that returned my call. Rose started going to that practice the following week.
Helping Other Families
We are very lucky to have medical insurance and access to a lot of providers. I have also worked in the healthcare industry and have a basic understanding of how insurance claims are processed. I have the energy to be persistent with our insurer. I have a great relationship with my daughter, and we talk about everything. I also have my NAMI colleagues that support me both professionally and personally.
But I understand that not all families have this type of access and support. This is why I’m so proud to be a part of a wonderful program developed specifically for parents and family caregivers of youth that are experiencing mental health conditions — people like me. It’s called NAMI Basics and it’s offered by NAMI organizations throughout the U.S. In the program, you’ll learn facts about mental health conditions and how to best support your child at home, at school and when they’re getting medical care. You’ll learn to take care of yourself. You’ll learn that you’re not alone.
Going to an in-person NAMI Basics is invaluable because you can connect with families that understand and you’ll learn from parents with local knowledge. But since not every community has a NAMI Affiliate and not every NAMI office offers the program, we have adapted the in-person content and it is now available in an online, on-demand format. Parents and caregivers can now access this potentially lifesaving information at a time and place that best suits their schedule.
I was on the review team for NAMI Basics OnDemand and each piece brought me back to my own experience as a mother in need of support — a mother of a child with a mental health condition.
One of the points you’ll learn in either NAMI Basics version is that you can’t know what no one has told you. NAMI Basics will tell you. With mental health conditions, I have found that having basic knowledge about what may be happening with Rose and why has been very helpful in our journey. It moved me from asking “this is normal, right?” to taking action so I can best support my family.
My family’s story is a happy one now. Rose is seeing a therapist she relates to, and it’s helping. She has a great circle of friends that support her. I can’t imagine where I would be without my NAMI colleagues and the support and information they shared with me, the same that is shared in NAMI Basics. NAMI is about hope and for me, the foundation of hope is knowledge. NAMI Basics will provide you that foundation and hopefully a better, fulfilling future for all our children.
Register today for NAMI Basics OnDemand.
Karen Gerndt is the acting national director for the Information, Support & Education team at NAMI. She oversees the staff that support both NAMI Basics and NAMI Basics OnDemand.
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