From a very young age, I understood that I was not like other kids. I knew that I had eyes that didn’t see very well, and lungs that didn’t breathe very well. I knew I was tall and skinny, and that I was not able to participate in physical education like the rest of the kids. I knew there was something wrong with my heart, and that’s why I couldn’t play too hard or be on the volleyball team. I knew I had Marfan syndrome, and I knew that it made me different. Despite all that, I managed to live a normal life.
Now at the age of 27, I am married, I have an amazing family (most of whom have Marfan syndrome as well), and I have traveled the world with my husband and some of my best friends. I am active, I am fairly healthy, and I have a positive approach to living with this condition. When people hear about the gravity of my condition, they often ask me, “But aren’t you scared? Isn’t that really hard to deal with every day?” And I say no. Why? Because you can live well, even knowing that you have a condition like this.
Taking Care of Yourself
Growing up, I never quite understood that so many problems with my body were associated with Marfan syndrome. Now I understand, just as many people who also have this condition do. Because I understand my body better, I am able to take better care of it. Aside from the basics, like taking my medication and getting my yearly echocardiogram, I also do yoga and I walk or ride an elliptical (at a slow pace, of course). I also try to eat as healthy as possible, and I drink more water than I drink anything else. I take care of my body because I want it to be able to weather whatever storms may come.
By focusing on how you can improve your situation, even in small ways, you can make a huge difference. Maybe learning how to cook a vegan meal or making a green smoothie will help you take better care of yourself. Maybe going for a walk every night with your significant other or children will help. Maybe just stretching for five minutes a day or going to physical therapy will get you on track. Get a massage or get a pedicure. Whatever you think will help, why not try it? Taking care of your body won’t make Marfan syndrome disappear, but it will help you feel better.
Focusing on the Positive
My mother is probably the biggest reason that I have been able to live well with this condition. She told me, from as far back as I can remember, that thinking positively was half the battle. While I frequently rolled my eyes at her (and still probably do), I strongly believe that she is why I’m able to deal with Marfan syndrome as well as I do. For many of us, hearing that we have this condition ˗ at any age ˗ can be overwhelming and downright scary. All of us deal with issues with sight, pain, joint and bone problems, breathing difficulties, and complications with our heart and arteries. What makes this easier for me is being able to see every day as a chance to do good, to be good, and to be happy. There are a lot of things in life that I was not given, and a lot of things in life that I am blessed with. I choose to look at what I was blessed with so that I can take the negative stuff in stride.
Accepting Your Limitations
Possibly one of the hardest parts about having Marfan syndrome is accepting that there are limits to what we can do. We have to accept that we are different from “normal” people, who can lift heavy weights or climb up five flights of stairs without cause for concern. We will not be able to play competitive sports, we will not be able to go bungee-jumping. Many of us experience chronic pain or migraines that limit what we are even capable of accomplishing in a day. There’s a whole long list of things you cannot (or should not) do. But you know what? There’s an even longer list of things you can do.
Do yoga. Go for a walk. Even a little bit of movement can change your body’s strength and stamina. Visit with friends and family. Go on a road trip. Read a book. Dance to some music. Play with your dog or cat. Travel the world. Make new friends. Learn a new talent. Start a new hobby. This list is virtually endless. Instead of thinking about all the things you can’t (or shouldn’t) do, think about the things you can do, and do them. Life is too short to be limited.