Why Thalessemia Is My Worst Enemy and Best Friend


Dear beta thalassemia major,

You thought you stole my life when I was 6 months old. You must have been so happy when I was diagnosed as a baby, thinking you could control me from here on out. But I have a question for you. Why me? Why did you, a genetic condition, choose me, when you chose no one else in my family? This question has haunted me for the past 20 years. You have made my life so much harder than it has to be. Why?

Because of you I always felt different and left out of groups. Because of you, I’ve been bullied and made fun of. Because of you, there are some days I just don’t want to get out of bed, since you have left me so physically and emotionally drained. Because of you, I am afraid of what the future holds. Because of you, I wake up in pain everyday, not knowing what surprise you may bring me today. Because of you, I hated myself and have been so ashamed of who I am. I never told anyone outside of my immediate family about you — about the medications, medical tests, doctor’s appointments, treatments, hospital visits and all the other gifts you’ve given me over the past 20 years.

Some days, I just want to end it. End the pain and the misery once and for all. Some days, I don’t see a point in continuing on if you’re always going to be looming over me.

But you know what, thalassemia? I refuse to let you win. I know you’re not going anywhere anytime soon. I know you will always be a part of me, but I refuse to let you define me. Whether you realize it or not, even with all the bad you have brought me, you’ve also given me some pretty good things.

Because of you, I have been given a unique perspective on life. Because of you, I know who my real friends are. Because of you, I have a support team behind me. Because of you, I have always pushed myself to be the best I can be. Because of you, I am able to find happiness in the simple things in life. Because of you, I have now found my voice, and I am going to use it to tell others about you and about our story.

Ever since we met, you’ve been my worst enemy, but also my best friend. You’ve taken me on a rollercoaster ride for the past 20 years. I know our journey together is not over yet, and I know you will drive me through countless other potholes. But know that I will never ever give up.

I can honestly say I would not be the person I am today without you. Some people may find our relationship strange, but I wouldn’t change it for the world. Thank you for being a blessing in disguise. Thank for providing me with a support team of nurses and doctors that feel like home. Thank you for giving me family of “thal pals.” Thank you for making me the person I am today.

Love,

Yasmeen


Find this story helpful? Share it with someone you care about.


Related to Beta Thalassemia

Teacher teaching her classroom of students at the elementary school

To My Child's Mainstream Classroom Teacher, From a Special Needs Mom

Two weeks ago I was invited to do a short presentation to a hall full of educators about my experience as a parent moving from a special needs school to a mainstream school. This got me thinking of just how anxious changing schools can be. But what overwhelmed me even more was the fact that entering the [...]
Worried young woman sitting at the chair and holding hand on head while male psychiatrist sitting in front of her and gesturing

When You Get Misdiagnosed Because You Have a Rare Disease

During the second major hospitalization I had after becoming sick, the local adult cardiologist and my primary care doctor came in my room around 10 p.m.  They looked very serious and announced I had pulmonary hypertension. They talked about transferring me to a better-equipped hospital, and about doing a bunch of other things. Eventually, they decided to [...]
friends hugging

The One Thing I Ask From Friends as a Special Needs Parent

Our family has moved a few times in a short amount of time since the start of our special needs journey. Among the stress of finding new doctors, therapists, good schools, a new home and church is finding new friends. Good friends. Friends that just get it.  You never really realize just how much your “before the [...]
Sketch of the painting brush and oil.Girl in an orphanage

The Darker Side of Chronic Pain We Don't Often Talk About

September is chronic pain awareness month. Since everyone has had experience with pain in some way or another, I’m going to raise awareness about the lesser-know, darker side of chronic pain. What’s darker than being in agony 24/7? Mental illness. I’m extremely open about my rare, chronic pain illnesses, multiple hereditary extostoses (MHE) and fibromyalgia, but the mental [...]