By Maya Brown-Zimmerman
Sometimes it’s easy to focus on the negative in having a genetic disorder/chronic illness. I have Marfan syndrome, a genetic disorder that affects the heart, eyes, lungs, skeleton, and soft tissue. It can be a literal pain.
But, there are some silver linings too, and it can be helpful to remind myself of those from time to time. Here are a few:
1. Height advantage. Marfan makes me tall – giving me the ability to reach the top of shelves, and see above the masses. I happen to be married to a man who is, shall we say, vertically challenged (there’s almost a foot difference between us), so without my height we’d have many unused shelves in our home, and be easily separated in crowds.
2. Flexibility. Hypermobility is a common Marfan feature. It helps me juggle life with three energetic children: I can grab Child One’s backpack, stop Child Two’s cup of milk from spilling, and quiet Baby Three in a single bound! My condition has made me not only physically flexible, but mentally flexible as well. Having a chronic illness has helped me learn to go with the flow. Flexibility is a must when you never know what life might throw at you!
3. Perspective. I know that things aren’t always as they appear. Sure, that’s a frustration behind having an invisible illness (people assuming I’m totally healthy and capable), but that frustration has taught me to be more compassionate. As the saying goes, “be kind; everyone is fighting a hard battle.” When your battle is one that’s often misunderstood, it’s that much easier to extend kindness to those around you.
4. Purpose. I have a Masters in Public Health, and I blog about medical issues (special needs parenting, the doctor/patient relationship, things like that). While my interests always leaned towards the sciences, my diagnosis turned them towards healthcare. I’ve developed a focus in patient/physician communication, and a passion for advocacy.
5. Family. I never would have found the Marfamily if not for my diagnosis. The Marfan and related disorders community is so close-knit that we call ourselves the Marfamily. I’ve made friends all over the world, and many of them are like family. They’re there to answer questions and lean on in times of frustration or sadness. But, they’re there to celebrate all the little and big things in my life unrelated to Marfan too. For example, many of them followed our adoption journey, and I was thrilled to introduce everyone to our new daughter at our foundation’s annual conference this summer. I also love that my younger son, who also has Marfan, is growing up surrounded by people who look like him, and adults who can serve as role models for him as he ages.
For better and for worse, I am who I am thanks to Marfan. It isn’t the sole thing that defines me, but it’s definitely a big part of what makes me, me. Most days I wouldn’t change a thing, especially when I take the time to consider the silver linings.
Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with The Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs and baby daughter while having a chronic illness at Musings of a Marfan Mom.
Marfan syndrome is a connective tissue disorder that affects about 1 in every 5,000 people, though only roughly half of affected people are aware they have it.