It’s wonderful to see that technology has allowed one to get support from people going through the same experiences from different parts of the world, different cultures, and nationalities. It is always important to remember that we are not the only ones going through this, and that there are many, many others who are having the same thoughts everyday. At the same time, we must remember that we still very fortunate, in so many ways, and continue to see the bright side.
I’m 16 years old, and I’m thalassemia intermediate. I’ve been taking folic acid all my life, and have been taking Hydroxyurea and Prednisolone in different amounts for the past two years. I’ve had three transfusions so far. Although I never allowed this condition to affect me, always pushing as hard as the others, always being active school and in extracurricular activities – it would be stupid to say that I would be the same person without this condition. My parents, being supportive the entire journey, have never put boundaries or gave me limits, whilst at the same time, always placing my health at the primary concern, rather than education.
What surprises me is the lack of teenagers in this website. I’ve only recently realized how different of a person I would be. The way I was constantly reminded that I should be grateful, how classmates and fellow peers couldn’t understand why I looked paler, almost green, compared to others. How I never succeeded in sports, and was always the first to get tired. It’s not easy explaining your condition to an entire generation that does not have the maturity it takes to understand what this disorder is. In 5th grade, I changed schools to a much bigger one, and for the entire first year, I was verbally abused. Only now do I realize the impact that one year had on me. I simply remember it as a horrible experience. But only now I can look back and see what a strong character it has made me. To be able to face 120 students who did not want to be friends with you, and still manage – is no easy task, especially for a 10 year old. No one in fifth grade really cares, and fitting in and having friends is a 10 year old’s utmost priority.
After that, things got better. Others grew up, and I had more confidence in myself to go out of my way to make friends. At the same time, a close friend of mine passed away due to cancer. Maybe these events in my life have made me appreciate and realize how valuable life is, and that every moment counts. And that we have that opportunity, just like everyone else and that we cannot feel deprived in any way. I don’t want this to be a pity story in any way, but simply to enforce that I am who I am because of this condition, and even though I have always not allowed myself to fall behind because of it, it is still a huge, and will always be, a big part of my life.
Currently, I am challenging myself in every possible way in school. And I find myself physically and mentally tired, all the time. Which is what surprises me, once again. Where are the teenagers? Am I the only one my age going through this. I’m doing the International Baccalaureate Diploma [IB Dip] as well as being a very active member of MUN, in my school. I’m not sure if you’re familiar with IB, but it is similar to AP, in which you do college level courses in high school. My biggest worry at the moment is college – but I suppose that is a worry for many juniors and seniors. However, living in Asia, financing my health and education if I study abroad is something I am still finding solutions to. Luckily, I have a year and a half more to think about this and be able to stay in the protective shield of my parents.
I hope this was not a too long read, I started writing and the words just flowed. I feel like I’ve shared a lot today, so please don’t be a stranger and do share your thoughts.
Thank you for your time!