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What It Was Like Growing Up With Marfan Syndrome

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Growing up is hard enough, but growing up with a genetic, systemic chronic illness? Below are some reflections and suggestions for learning to make sense of ourselves and our bodies.

Adolescence and Chronic Illness

Adolescence and young adulthood is a time of transition. Our bodies change. The way others relate to us and the way we think of ourselves changes. We may start to want more independence from family and begin to make more choices for ourselves. Our friends and peers become more influential in our lives, whether we like it or not.

Going through this transitional time as a person with chronic illness(es) adds another complicated layer to this time which is already characterized by change, instability and exploration. Having a chronic illness means that in addition to going through the usual developmental milestones of adolescence, we are also learning to understand and manage the physical, emotional, psychological and social consequences of our disorder.

Our bodies are the vehicle for how we interact with our world and how other people interact with us. We learn to make sense of ourselves and our bodies based on these interactions.

We also live in a society where health is privileged. Our world, our work, our schools, our transportation, our grocery centers, our parks (I could go on and on) are mostly organized for healthy people. When we are sick or live with a chronic illness, these ableist structures can remind us that we are not the norm.

There are times in our lives where we might feel this more intensely and I would argue that adolescence is one of them. As adults, with the perspective of hindsight, we might push back or reclaim our uniqueness as people with Marfan syndrome. It does not mean we don’t still feel it, though.

Becoming Aware

As a young girl growing up with Marfan syndrome, I think I only began to be aware of my disorder (apart from the many doctor visits) when I had my first heart surgery at 10 years old. My mitral valve needed immediate attention. Months after surgery, I remember laying on the floor playing Barbies with my sister, because when I sat up I would get dizzy and my heart would race. No post-surgery complications would stop me from making sure Barbie attended high school.

Two years later I had an aortic root replacement but because I felt physically OK at the time, I was mostly upset at the idea of missing out on the grade 7 drama. I am lucky enough to have a family who took on the responsibility of managing my care so I could focus on important child business – like convincing them I had to have a dog, play hopscotch and ride my bike with my sister and friends. I do not recall understanding or questioning why I felt so fundamentally different; I only knew that I was.

As I grew older, I become increasingly more aware of the intricacies of my condition. Some of this was likely due to taking on aspects of my own care and some was from watching how the decisions, fears, consequences and symptoms I lived with were so different from my peers.

For example, when I was 17 I underwent a spinal fusion. That surgery was my choice, in consultation with my orthopedic surgeon and family. It meant missing out on the end of grade 11, my friend’s prom and other summer activities. It also meant months of horrendous pain, isolation, and some long term consequences for the trade-off of having a straighter spine. This decision was in line with my mantra at the time: “I just want to be normal like everybody else.”

Identity and Life With Marfan Syndrome

As a teenager and young adult, I attempted to understand how living with Marfan syndrome fit into my identity. On the one hand, I wanted to feel comfortable and able to accept my condition as a part of who I was/am, instead of constantly having to worry about how to conceal it or when to reveal it. On the other hand, I felt the pull to reject and camouflage my diagnosis, despite how much it showed, in an attempt to fit in with society’s standards because it made me feel different and flawed.

These feelings contributed to behavior I am not proud of. Making risky decisions. Finding myself in dangerous situations. Spending time with people who were not concerned for my well-being. Harming myself and my body. Pushing away the people who truly cared about me because I felt profoundly misunderstood.

Some people say this is a phase many kids go through, but it was more than that. I had a deep-set anger, sadness and shame I could not articulate at the time. Instead I tried to escape. I was desperately seeking loss of inhibition, approval and self-worth.

What I did not know until I began my undergrad and master’s degrees in sociology where I chose to research chronic illness, disability and Marfan syndrome, is that the way I was feeling and the behaviors I engaged in are common passive coping strategies experienced by young people with various chronic illnesses.

I was simultaneously comforted and outraged by this information. People research and write about this stuff? Why did I not know about this? What do we as a community need to think and do differently to help our young people?

This leads to the area where I think we can improve — how we think and talk about acceptance, specifically as it relates to Marfan syndrome awareness.

A Push for Acceptance

There were many moments in my life where I was not ready, willing or able to “accept” my diagnosis for the reasons I listed above. As a young adult, when I tentatively turned to professionals and patient groups for support and understanding I was met with the sentiment that — for my own good — I had to accept my diagnosis.

I thought, “How can I accept something as a part of who I am when my social world views it as undesirable?” These moments could have been opportunities for discussion about what it means to me to live with Marfan syndrome and what acceptance of my diagnosis could look and feel like. This kind of discussion may have brought me closer, rather than pushing me further away.

I don’t know for sure, but perhaps the motivating factor behind their push toward self-acceptance was related to concerns for my physical health. If you have Marfan syndrome you’ve hopefully heard that medical care and monitoring, specifically of the cardiovascular system, is central to lifelong management of this disorder. In that light, it’s logical that the people in our lives who hold caring roles would want to ensure we get the care we need to survive.

But as an adolescent and young adult, it was hard for me to understand what was driving their insistence. Indeed, this problem is undoubtedly related to a critique I’ve heard from other people with Marfan syndrome and felt myself — that the focus of Marfan syndrome care and research has been so intensely on keeping us alive (and for that we are grateful), but less so on what quality of life looks like and how to improve it. Thankfully I think that is beginning to change as there is a recognition that we need both.

We Need Both

In a similar vein, it is entirely possible to feel confused, uneasy, angry and a million other thoughts and feelings related to how your diagnosis fits with who you are. And yet, you should still continue to seek the follow up medical care you require.

At the end of the day, you do not have to accept your diagnosis, fully or in part, to be aware that your diagnosis can have deadly consequences.

So if you are a young person and can relate to any of this, I want you to know — I see you. Heck, if you’re an adult and you’re feeling this way too, you are not alone. There are many possibilities for living well with Marfan syndrome. My hope is that through continued conversation and awareness of a varied kind, you will find what fits best for you.

This story originally appeared on Sarah’s blog.

Originally published: October 7, 2019
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