Understanding how Fabry disease affects our mental health
An intriguing exercise modifies the five stages of grief to specifically address Fabry
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When I learned of our family’s first Fabry disease diagnosis on an August afternoon in 2019, I recall a sudden surge of energy and purpose as I walked from the doctor’s office to my car. I was on a mission. Distractions melted away, and I got to work connecting to prayer support, learning about Fabry disease, finding the best treatment options, meeting with competent doctors, getting genetic testing, and navigating the financial complexities of this medical nightmare.
The initial months post-diagnosis were a blur of appointments, phone calls, appeals, updates, and discoveries. Yet, in the sprint to find remedies for my family’s physical health, I had overlooked their mental health.
Years down that windy Fabry road, though, I have seen that bumps along the way are often caused by the psychological strain of this condition.
Thankfully, awareness is growing and assistance is available for Fabry patients who are struggling mentally. Speaking at a Fabry Support and Information Group meeting in Texas recently, a Chiesi Global Rare Diseases representative pointed us to Mindfully Rare, an organization that is specifically designed for people with Fabry disease and their caregivers. Mindfully Rare offers support, testimonials, tips for improving mental health, and links to great resources.
I followed one link to Rethink Fabry’s website, which is also rich with helpful information. In one section, it adapted Elisabeth Kübler-Ross’ five stages of grief to the context of Fabry disease, which I found intriguing. They include denial, anger, bargaining, depression, and acceptance.
Reader comments
I’d like to connect the experiences of my readers with these five stages by drawing from comments I’ve received on my columns. One commenter notes, “My mother was in denial about [Fabry disease]. Even as an adult she would say, ‘You don’t have it.'” Denial can be devastating to a patient when the response comes from someone they lean on for support.
Anger follows denial, manifesting differently for every person. It may be linked to guilt, withdrawal, resentment, or defensiveness. The object of our anger could be people who misunderstand our condition or treat us differently because of it, or, we might be angry at the disease itself and the stigma it brings. “I am the carrier,” one commenter says, “and both my sons and all four granddaughters have this horrible disease. Imagine finding this out at age 75. Guilt consumed me and the question of who passed this on.” The pain in these words echoes through many of our stories.
The next stage, bargaining, is one I can relate to from my own experiences as a mom with Fabry disease but without symptoms. Rethink Fabry reframes it like this: “It’s natural to ask if there was a mistake or if there are alternative ways to manage your condition. That’s why it’s important to make a plan with a healthcare team and gather resources to help.”
I’ve often questioned why my kids carry such heavy burdens when the same Fabry gene mutation they received from me has affected me so little. The variance of Fabry disease leaves our family and friends confused, and people might underestimate its severity in one case or another.
Additionally, a reader’s comment noted, “Many in Brazil don’t have the slightest idea of what I have or feel. This has been happening since childhood.”
The fourth stage is depression. One commenter opened up about the angst that plagues them, saying, “Anxiety and panic seem to hound me like a demon, but I have to keep putting one foot in front of the other and pray.” Another writes, “Now I am in my 60s, my body is my enemy. Sometimes, socially speaking, it is difficult, I want to do all the things my friends do but I just don’t have the stamina. This creates depression but I just keep going because that’s all we can do.”
It’s noteworthy that both of these vulnerable comments end with hope.
Stage five is acceptance. We can learn from each other regarding how to find hope. If you doubt that, read the above comments again.
Because of the emotional and psychological strain caused by Fabry disease, we can find ourselves somewhere among these five stages looking toward an end goal of acceptance. When we reach out for help, connect with other Fabry patients, and keep going, we are making important progress.
Note: Fabry Disease 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 Fabry Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Fabry disease.
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