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Since my journey with systemic mastocytosis (SM) began, many facets of my life have been altered. Over the course of a year, everything about me changed. My career as a vehicle sales representative, where I can go out to eat with friends, where I can shop, and what I can wear were among the many changes I faced.

One of the most difficult to accept and adjust to has been my lack of physical ability. In times of great struggle, it is common to look toward those hobbies that bring grounding and calm. For me, the mountains have always been a safe place to escape to. My dream has been to hike the entire Appalachian Trail in search of growth and personal strength.

With my new state of being, even a flight of stairs or carrying groceries can cause physical and respiratory distress. Another hobby that has been surrendered is disc golf. The amount of time, lengthy courses, and strength required to complete all 18 holes leave me with unrelenting exhaustion for days at a time. I cannot go to a shopping mall with friends as the perfumes from various stores have set off severe allergic reactions. Oftentimes, plans are changed or canceled due to pain or gastrointestinal symptoms. And then there are the beginning stages of memory loss coupled with brain fog that make me a poor teammate for any trivia night outings.

With all of these changes happening seemingly overnight, it was very difficult to emotionally regulate myself initially. It became clear to me that finding new ways to cope with stressors was of the utmost importance.

Read about experimental therapies for SM

Instead of hiking 10,000-foot elevations and finding my solace at the peak, I now enjoy bird watching. I’ve also been researching types of plants and how to identify them. Walking nature trails is still possible with frequent breaks, which satisfies the need for a hike to some degree. Other activities that I have found enjoyment in are journaling, reading, and singing. These offer me a release in times of frustration, joy, or boredom.

If someone you are treating is experiencing a loss due to a rare disease it is important to be understanding. Somedays, we may look “normal” or even seem more functionally independent but that does not take away from the sacrifices we have been forced to make. Continued education and research, coupled with sharing our experiences as patients, will create an atmosphere of acceptance.

I am very lucky to be surrounded by loved ones who have heard and seen the difficulties that plague my daily life and are now aware of my limitations. With that has come acceptance of who I am now, what I am capable of, and a kindness that inspires me to keep going every day in the face of adversity.