Mental health must be part of the rare disease awareness discussion
There's too much stigma associated with depression and other emotional issues
Mental health stigma can feel sharp, like a splinter in your thumb or a paper cut. The stigma is so powerful that it can bar those newly diagnosed with rare diseases or chronic illnesses from seeking out the treatment they might need.
After my pulmonary hypertension (PH) diagnosis in 2016, I distinctly remember an overwhelming sense of despair, anxiety, confusion, and uncertainty. While I was grateful for the many family members, friends, and co-workers who checked in on me, I couldn’t help but yearn for connection with somebody who survived the earthquake of their own diagnosis and lived to tell the tale.
I scoured online for stories about other people living with PH, curious to find answers to a litany of questions: Were people still working or pursuing careers, did they start families, did anyone get a lung transplant … and how long did people expect to live?
It’s difficult to adjust to any new situation, but that’s especially true for a shift in one’s lifestyle and health. The entire process of my PH diagnosis felt like a shock to the system. My care team did a wonderful job preparing me with a treatment plan to manage the physical symptoms of the disease. The doctors prescribed medications, pulmonary rehabilitation, oxygen therapy, and plenty of rest.
After a few weeks, with thoughts of mortality swirling in my head, it seemed as though my treatment plan didn’t include anything to address my mental health.
Talk therapy as a first step
Recognizing the heaviness of the moment, my partner suggested that I might benefit from a little talk therapy. I’d long rejected the notion that I needed therapy or that I had enough problems or issues that would warrant seeking such treatment. As I sometimes do, I was saying no to something initially, followed by many more times, before acquiescing.
Finding the right therapist can feel a bit like looking for a significant other: You may have to kiss a few frogs before finding that prince. My first experience with a therapist was not a match. I’d wanted to talk about my PH symptoms — the struggle to climb a few flights of stairs before feeling incredibly short of breath, among others — and whether or not I would live to see the big 4-0. But our conversation went in other directions, so after just one session, I pulled the rip cord and ejected myself from the plane.
Still, I didn’t want my mental and emotional health concerns to go unspoken. The Cleveland Clinic estimates that “one-third of people diagnosed with a serious, life-changing chronic illness or disease will experience symptoms of depression.” It adds that it’s not uncommon for people to exhibit “feelings of sadness and despair” after receiving such a diagnosis.
The National Institute of Mental Health also notes how people with additional chronic conditions have a higher risk for depression relative to healthy people without such conditions. Knowing that I struggled with many of these feelings, I eventually connected with a talk therapy program that worked for me. The sessions helped me process everything I felt before and since the PH diagnosis and gave me the courage to speak more openly about the mental and emotional side of chronic illness.
What we can learn when a senator puts his health first
According to a recent KFF/CNN Mental Health in America Survey, 62% of respondents described the stigma related to mental health as “a big problem.” While we’re seeing more celebrities and public figures speak about their experiences, the stigma can still make it seem like a rare phenomenon.
Sen. John Fetterman of Pennsylvania announced this month that he was being hospitalized to treat clinical depression. Fetterman had a stroke last May and has been recovering and adjusting to life since. News reports illustrate how the senator’s constituents have responded with empathy and support, including an anecdote of one individual who went to therapy for the first time.
Raise awareness to squash the stigma
While I can’t imagine what it’s like to have my health discussed on cable news, I can relate to the very human experience of a serious health condition and how that affects one’s mental health.
Today, on Rare Disease Day, we have the chance to talk about the mental health side effects that accompany these diseases. No two experiences are the same, but that doesn’t mean we can’t find commonalities. The Pulmonary Hypertension News Forums are an excellent place to connect with others in the community to share your story. By giving voice to the mental health aspects of rare disease, we do our part to squash that stigma.
Follow Mike Naple on Twitter: @mnaple.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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