I like to think that I’m a fairly positive person, especially when it comes to my Marfan diagnosis. It has taken a long time to get here. Not every day is a good day, but, overall, I see my Marfan diagnosis as something that benefits my life. Then there are my bad days. They are filled with joint pain, migraines, and sometimes the inability to get up out of bed. We all have our bad days physically, but we keep going because that’s our life.
Recently, however, I’ve been forced to reflect on another pain that comes with having this condition. On March 27, 2018, I learned that a close friend, Milan Lazorcik passed away from heart failure, which was suspected to have been caused by Marfan. Milan knew he had Marfan and was being treated. He was a frequent annual conference attendee. He took good care of himself. He followed “the rules.” Yet he’s still gone.
With Milan’s passing came all of the questions that normally come with the loss of a loved one. Why him? What happened? And when you have the same condition as your friend who passed away, another question follows. Am I next?
Unfortunately, my friends with Marfan and related disorders and I are all too familiar with these questions and the emotions that come with them. We are forced to think about our mortality at a very young age. We learn early on that we are, in fact, NOT invincible. Doctor appointments, medications, surgeries, heart monitors, physical limitations… the list goes on and on. Marfan and related disorders take a toll on you — not only physically, but also mentally. And it’s important to recognize this.
The hoops that we have to jump through to keep ourselves healthy take a toll. Depression, anxiety, and PTSD are just a few of psychological effects of living with Marfan or a related disorder. To say it’s not easy is an understatement.
As I reflect on all of these emotions, I remind myself that I’m not alone. At the same conference where I met Milan, I also met many other amazing people who were going through the same emotions as I am and are now also facing the same questions and grieving over the loss of a friend. Do we all handle it differently? Of course. Do we have to handle it alone? Definitely not. If you’re hurting, talk to someone. If you need more help, ask for it. Take care of yourself mentally the same amount you take care of yourself physically.
Seeing a therapist to talk about my problems was one of the best decisions I’ve ever made. That, in addition to an even better therapy, my Marfamily, is what keeps me going. I encourage you to find what works best for you. The Annual Conference, the Foundation’s mentorship program, Family Camp, Marfan Connect, the Foundation Facebook page, and so much more! There are so many opportunities to find your “therapy” or ask for help. The right way is the way that makes you feel good. Just remember, no matter which way you choose, it never has to be alone. Milan taught me that, and I’ll never forget it.
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Dominga Noe was diagnosed with Marfan syndrome when she was nine years old. Originally from California, she began working for The Marfan Foundation in 2016 at its New York headquarters. Now she lives and works from Kansas City, MO as the Foundation's Marketing and Design Manager. A long-time Foundation volunteer, Dominga is the first staff member who has Marfan.