During the first two years of my daughter’s mental health diagnosis, I was given advice that I needed to ensure I was taking care of myself. While I would always reply politely, my self-talk was “easier said than done.” My family and I were in survival mode. My only concern was her and what I had to do.
Serious Mental Illness (SMI) has been defined as “a mental, behavioral, or emotional disorder resulting in serious functional impairment, which substantially interferes with or limits one or more major life activities. The burden of mental illnesses is particularly concentrated among those who experience disability due to SMI” (National Institute of Mental Health).
My daughter’s first episode happened while she was at college. While I was at work, the guidance office called and said my daughter was leaving by ambulance because she had shared thoughts or ideas of suicide. This is called suicidal ideation. My daughter had asked them to contact me and meet her at the hospital.
This was the beginning of our six-year journey. We have experienced ER visits, hospitalizations, and cycling in and out of wellness. It has been emotionally draining and I have experienced some health complications. I recently attended the NAMI Illinois 2022 Conference and attended a breakout session titled Compassion Fatigue. Compassion Fatigue is a concept that professionals or caretakers experience emotional, physical, and spiritual distress. I have learned through my journey that self-care is essential to my being an effective caretaker.
Compassion Fatigue and Symptoms
Symptoms may be physical, emotional, and/or life- or work-related.
Physical - headaches, fatigue, sleep disturbances, muscle tension, digestive issues, cardiac symptoms
Emotional - poor focus, feelings of overwhelm, apathy and numbness, addiction and self-medicating, isolation and withdrawal, pessimism, loss of interest in previously enjoyed activities, irritability and anger, memory issues
Life- or Work-Related - decreased productivity, reduced sense of accomplishment & joy, feelings of inadequacy, avoiding our loved one or work, increased absenteeism
I have had a combination of physical, emotional, and life or work-related symptoms. Two years into this journey I was diagnosed with Hashimotos. I made an appointment because I felt exhausted every day and all day long. My question to my primary doctor was: “am I depressed because of my daughter’s diagnosis or do I have something physically wrong with me?” My doctor believed the chronic stress I had lived in had contributed to my Hashimoto’s diagnosis.
Strategies for Self-Care
The first step is to acknowledge the need for self-care, scheduling, and creating boundaries.
One of the techniques I have learned to use when time is limited is breathing exercises. This has been very helpful when I experience acute stress. I have spent countless hours in an ER wait room. My loved one is experiencing symptoms and the situation is out of my control.
I have learned that I need to schedule protected time for self-care. For me, this is time for a walk, quiet journaling, and reading. The goal is to create time for activities that give me peace. I also need to carve out space for socialization that energizes me. The primary relationships that bring me joy are time with my husband, siblings, and girlfriends. As an adult with a busy life schedule, socialization often becomes a challenge. Now that I mindfully schedule my time into these buckets, I experience less stress.
The stigma surrounding mental illness impacts all of us. I need to stress the importance of self-compassion and seeking professional help. Our daughter’s care team at The University of Chicago advised me to attend therapy to learn how to navigate the grief, difficulties of being a caretaker, and life balance. This is where I learned the importance of boundaries - something I continue to work on.
The Next Chapter
I fluctuate with my stress levels and my ability to practice self-care. Our health team at the University of Chicago gave us literature on NAMI. NAMI is where I found my people. My own therapy, NAMI support services, and practicing self-care sustain me. My husband and I attended the NAMI Family-to-Family Course and began attending a NAMI Family Support Group. It was life-changing for us. Where before we were barely surviving, we now have a safe place to express ourselves.
Ending Thoughts
Please do not become angry with yourself if you backslide. Practicing self-care is a muscle you develop. I encourage you to structure self-care as a time of calm so that, when the chaos of life comes, you may rely on the memory and muscle of the practice.
Read more:
Taking Care of Yourself. NAMI National.
Mental Illness. National Institute on Mental Health.
Programs. NAMI KDK.
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If you are in crisis, call 988 or text NAMI to 741741 for 24/7 mental wellness and/or crisis support. If you are facing challenges related to substance use or mental health, you may call the Illinois Warm Line at 866-359-7953. Visiting this NAMI page as well as contacting the NAMI Helpline at 1-800-950-6265 or helpline@nami.org will connect you to information related to numerous needs and concerns.
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