As told to Marnie Goodfriend

January is National Blood Donor Month.

I’ve had sickle cell anemia since I was in my mother’s womb. My older brother also has the condition, but it affects us each differently. Once, when we were kids, he visited me in the hospital, where I was inpatient to receive a blood transfusion, after he’d spent the day playing in the sun. I was angry that I was admitted to the hospital once every other week, while he never was. This was an early lesson for me that different people with this disease experience it differently. For example, I’m a sickle cell disease warrior who experiences pain every day and needs blood transfusions often.

While I was growing up in Michigan, my mom and dad tried to keep things normal, but I had many limitations. I was curious and wanted to be like the other kids. But intense exercise is a key stressor on the blood of people with sickle cell anemia, so I’d watch my friends do things like swim in lakes and go tubing, but I couldn’t join in. One year, I went to Girl Scout camp. I wanted to stay and ride horses all summer, but my parents picked me up after two weeks. When I was young, my mother helped me understand my condition. She’d say, “You’re not different from your friends who get a cold or the flu. It’s just that your sickness is a little worse, and you need to go to the hospital.” That’s how I understood things for many years.

In high school, my parents allowed me to apply to all the colleges I wanted to go to. They never wanted my circumstances to destroy my dreams. But, when I was accepted to out-of-state schools, my mother sat me down to talk about what life would be like if I went at it alone. “I’ll figure it out,” I told them. “What will you do if you can’t walk,” she asked. I knew she was right. Sickle cell takes all the energy from my soul, and some days, all I can do is be still.

I enrolled at a local four-year university to be near family and the care I needed. I lived on campus, but I’d get sick often and be back in the hospital. It was before cell phones, so none of my friends knew where I was. I’d disappear in the middle of the night with my parents, and that was it. I was really mad for a time because I didn’t understand why I had to live this life, trying to date boys and be cute instead of being a sickly kid, exhausted simply from carrying her bookbag. I looked like a normal student, but I was never normal. If you receive blood throughout your childhood, you need different types of blood with different antibodies often, and I needed more blood donations as a young adult.

As I moved into a career in logistics after college, I rarely told anyone I have sickle cell anemia. If I had to be out of work, I would use a different but related excuse, like a pulmonary embolism or arthritic issues in my foot. When I did tell employers about my condition, I felt that I was looked at as less-than, and it prohibited me from moving up. Sometimes I need transfusions or pain medications to feel better, but I always need understanding and empathy, which hasn’t always been available in the workplace.

2023 (Photo/Jason Avant)

As I got older and thought about romance, getting married seemed out of the question. Why would someone want to take care of me? When I long-distance-dated my now-husband, it took me three months to tell him about sickle cell. I explained that I had a blood disorder with sickle-shaped cells instead of round blood cells and a blockage of oxygen that wreaks havoc on your organs. “The average lifespan for someone with sickle cell is in their 40s. Do you still want to be with me?” I asked. He took a couple of weeks to think about it, then he said, “I want to be able to take care of you.” Four years later, I moved to Dallas, and we got married.

My husband and I talked about having children, which was something I’d never considered. It was too difficult to imagine passing on and leaving a family behind. But getting married changed things for me, and we decided to try for a year. Just as we were about to give up, I got pregnant. This baby inside of me took all my love — and all of my body, too. He sucked every nutrient from me. I had sciatica, multiple bouts of pneumonia and a pregnancy cough where my lungs couldn’t inflate fully. As a result, I spent even more time at the hospital. When I got home, I knew I couldn’t work in another high-stress office environment, so I started photographing babies and built a business that grew from there.

I also ramped up my patient advocacy, something that came naturally to me. My mom used to work for the University of Michigan, so starting when I was about 6, she would take me to lectures about my disease and have me stand up and tell my story. My passion for helping others with their health journeys grew from there.

Over the years I’ve learned that advocacy is much bigger than my own story. I’m no longer that little girl in the hospital bed. I’m a fierce advocate, and I’m determined to change the narrative — not just for myself, but for so many people with sickle cell or other chronic illnesses who depend on blood donations from complete strangers.

I realize that giving blood isn’t top of mind for most people, but I hope everyone will read my story and take some time to think about how much good they can do by simply donating blood. And I especially want to encourage people of color to donate. For sickle cell patients, people of color are the best matches, but donations aren’t always readily available, and waiting days for blood is agonizing — not only for me but also for my parents, my husband, my son, and anyone else who loves me.

I know there are stigmas and fears around donating blood, like fear of disease, medical environments and even needles. But I want people to understand that donating blood is safe. And needles may be scary, but if you really think about it, isn’t that something you might be able to get over if you realize that donating blood will literally save a life? I’m living proof.

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