On Navigating Relationships with FD/MAS
In January 2025, FDMAS Alliance’s Patient Advisory Council hosted a Community Meet-Up to discuss navigating relationships with FD/MAS. In light of that conversation, Reyes Vila-Belda, PhD, Professor Emerita from the Department of Spanish and Portuguese at Indiana University, shared some reflections. We are honored to share her thoughts in her words below:
On Navigating Relationships with FD/MAS
by Reyes Vila-Belda
Social relationships: Most of us, with FD/MAS, especially those with physical deformities, who use crutches, or wheelchairs, or other mobility aids, are aware of the reactions our presence provokes in others. People glance at us twice. Children — and often adults– stare. They point to us with their finger or ask the adult who is with them what is wrong with us. Or they simply express their surprise at seeing someone who looks very different. You must be strong — especially when stepping into a new community. The first day of school. A new job. Teaching. Giving a presentation. Standing before a crowd. A party. These are the moments when we want to connect, to belong, to make friends. And yet, they are the moments when we feel most set apart.
How to navigate that: Having emotional support is critical for times like these. If you are lucky, you have the full support of those who love you. They remind you that people who point at you don’t mean badly; they simply have noticed that we are different. These reactions can also be painful for the people who love us. I remember how hard this was for my children when they witnessed these reactions. They weren’t just upset – they felt hurt for me.
Personal relationships: Growing up, as an adolescent, it was not easy to have normal relationships with others, especially with members of the other sex. Often, I was left out. No Valentine’s dances for me. No New Year’s Eve parties. No Saturday outings with school friends to meet boys —back then, schools in Spain were segregated. I was the ugly one. And I often felt very lonely.
When I met the person who years later became my husband, I told him clearly about my condition and asked him to stop seeing me if that was something he thought he couldn’t handle. Later, while planning our wedding, I even took him to see my doctor and asked the doctor to explain the potential consequences of living with FD to my fiancé.
How to navigate these and other difficulties in establishing personal relationships? I am Catholic and I rely on my faith. I believe in God, a loving Father who created me as I am for a reason. Despite some people’s reactions, my illness is not a punishment. It is part of who I am. No doubt, it is a challenge, but challenges are part of living.
My Catholic faith also encourages me to love and help others. And doing things for others is not just one way to navigate difficulties – it brings other perspectives, and many, many rewards. By helping others, I have made wonderful friends. In fact, they have helped me just as much. Helping others is a powerful way to look beyond oneself.
Reyes with her son, daughter, and son-in-law
The importance of a support system: My two children are essential components of my support system. They love me dearly, and the love is mutual. Most of all, my children love me for who I am, not because of my condition. Additionally, they speak to me with honesty – direct and unfiltered – which I both need and appreciate.
My parents, especially my mother, were other rocks in my life. My mother encouraged me to study, to go to college and get a degree, to study abroad, to do things I love (like reading), and to have a professional career. This was not as common for women when I was growing up, making it even more meaningful to me now. I also have good friends with whom I enjoy life – we go for walks, sing Christmas carols, go to the theater, share potlucks, give me rides to go to the doctor, and stay in touch even when miles apart.
For all of them, my illness is not an obstacle, or something that separates me from them. It is part of me. They all accept me as I am, as I also accept them as they are.