When you have a disease of the muscles, such as Duchenne muscular dystrophy (DMD), its physical nature is clearly visible. What is less visible, but nonetheless important, are the mental scars that arise from living with this disease.
In my experience, while I have many of those mental scars, I’ve also been fortunate to have engaged medical providers who realize being cognizant of these psychological struggles can be as important for my quality of life as treating the physical symptoms. And as a result of those experiences, I have some advice for how health care providers can better balance physical and mental health when treating a rare disease.
Living with DMD’s Inevitability
Growing up with DMD, I had not considered that my mental health was its own suffering or even a factor in how I managed life with the disease. A shift in my thinking occurred around the time I was completing my college education, about 5 years ago. Since the disease progressively weakens muscles, its physical effects intensify over the years, and so do the mental scars. While the life expectancy of DMD patients has steadily increased in recent years, at that turning point moment in my life, I was well aware that within the next 10 years or so, the strain on my heart and lung muscles could cut my life short.
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By that summer of 2016, it was becoming apparent there was a lot weighing on my mind. I was having an increase in thoughts that raced through my mind, especially in the evening. It was becoming increasingly difficult to fall asleep some nights and, on occasion, I would cry myself to sleep. My mortality increasingly became top of mind.
During this time, I had been communicating with a social worker from the Cincinnati Children’s Hospital, the nationally recognized clinic I received care from since 2004. Discussing mental health issues had not been a priority until I finally found the courage to reveal what I was experiencing. They responded saying it was their “main role and purpose” to help me with my mental state of mind. It was reassuring to hear that someone was there to listen.
Learning How To Speak Up
I finally realized that it’s OK to express how I feel emotionally and psychologically, and ask for help with mental health issues, and not just the physical aspect of living with DMD. I credit my clinic for providing the priceless resource of a social worker that would listen.
When I meet with my team of specialists, there have been instances when some of them have made sure to ask about my mental health. My cardiologist, a psychiatrist and palliative care specialists, for example, have all inquired about my mental state. It is an aspect of my care that I appreciate a great deal. However, this is not always the case.
Throughout my life I have experienced what I call medical and health traumas. These are “moments” I believe that are closely related to the nature and progression of my DMD. Some of these traumas have occurred at a medical facility. For example, I remember having surgery to fuse my spine – a procedure often needed for patients with DMD. I was just 11 years old. Talking this through with care providers, I recalled waking up one night at the hospital hooked up to several machines, crying and being consoled by a number of healthcare providers. I also recalled the feeling of a light burning sensation when the doctors checked my bandage. It helped me to recall these traumatic experiences with the aid of my care providers. They listened. They helped.
On the other hand, however, there have been occasions when my medical providers could have been more empathetic, more aware of how hard these traumatic experiences in and out of the hospital were having on my mental health, and thus my physical health.
Some examples stick in my memory. When I fractured my arm, a specialist said he was sorry it happened, but that I probably should have been on the medication I now take for bone density. In that moment, an expression of empathy would have been welcomed. Elsewhere, some tests I receive take a toll on my mind, especially x-rays where I’m uncomfortable with moving my body and fear getting injured. When I have made doctors aware of this, I feel like I’ve been brushed off.
In these examples and others, it would have helped if the providers were more empathetic, taking into consideration how my mental state of mind was intertwined with my physical, more easily measured, state of well being.
Through all these experiences, I have learned to bear some responsibility to ask for help with the mental or emotional aspects of the health care process, to play a more active role in my own treatment. It begins with speaking up.
