Living with the daily struggles of Thalassemic blood disorder at university

A story about my journey through life as a Thalassemic

Most people argue at some point of their lives that life has been unfair to them. Sure, that may be true for most people but what they don’t realise is that there are others who are in a far worst condition than them. Having to deal with struggles that are with them their entire lives and I am one of those special people. When you see me in public you’ll just see a regular guy, dealing with the everyday life, like every other person. But it’s like as the saying goes: “you can’t judge a book by its cover.” I am the book that depicts a life with a series of unfortunate events. It is the book ‘My Sister’s Keeper’ by Jodi  Picoult that has entailed the most accurate description of my life.

My name is Hunain Haider, I am a first year Law student at Newcastle University from Islamabad, Pakistan and I am a Thalassemic. Thalassemia is a genetic blood disorder of which my mum is a carrier. Most people reading this might not even know about this as unlike leukemia this has not received people’s attention. Nonetheless, Thalassemia is a fairly common around the world and there are many others like me, who share the same life experience. So on behalf of the Thalassemic community let me share my story.

The day I was born my parents were happy they had a healthy baby boy in their lives. What they didn’t know is that three months later they would find out the most heartbreaking news from the doctors: a son who has a life-threatening disease. In a Pakistani community finding out that you had a disabled child was itself bad enough. My parents had to deal with discrimination and badmouthing from others. The sad truth was that the elders in my family wanted to put me to sleep, because it was bad for their family reputation. My parents, however, loved me no matter who I was, shunning everyone’s views and raising me in a happy environment. My dad in his initial years as an engineer was subject to discrimination in the workplace because of me, but that didn’t stop him from being the world’s best dad and now he’s the head of his workplace. My mum had to make sacrifices as well, she had to let go of her social life and her career just so could take care me and my condition. And for this,  I have been grateful and blessed to have such awesome parents.

When I was younger I thought I was normal like everyone else and my parents kept it that way. When I went to the hospital for blood transfusions they would tell me that this would make me Superman and I honestly believed them. However, as time passed I became more aware of what I had and I was okay with it, I believed that everything happened for a reason. But as I aged, things started to become worse. I had to go to the doctor more, take multiple medicines for my health and miss tonnes of hours of school. My life, basically, was the hospital.

My parents

The kids in my school and college would pick on me because I was different, because I looked like an outcast and at one point it was true. I had been subject to constant bullying. I looked like a 10-year-old mutated person when I was 18 years old. People were hesitant to be my friends and those who were were bullied as well. Girls who I liked in school rejected me. I remember this girl who I loved so much rejected me, she broke my heart and told me the ugly truth about my life. I decided to isolate myself from others after that. My life became so depressing that I had to go to constant psychiatric appointments and take anti-depressant medication. There was a stage of my life where I would be subject to constant internal and external bleeding because my platelets were at an all time low. During this period of my life, I was hospitalised for days. My parents were worried 24/7 for me and prayed non-stop, as they did not know what was going to happen, I honestly thought I was going to die like many other Thalassemics. At one moment I wanted to kill myself. I felt I was cursed.

Aged 18

But I survived and I promised myself that I was not going down to go down that easily. I told myself that I was a maverick and I can conquer all the obstacles that I come across. A year later I came to England for my studies. I was a 19-year-old teenager then who still looked like a toddler and sure people ridiculed me and called An “East-Asian looking Kid”, but my sacrifices somewhat paid off as the doctors here made life much more tolerable. I was subject to several treatments which included testosterone injections, liver checkups, proper transfusions and so much more. Nonetheless, I am still subject to discrimination for my appearance.

The struggle still remains. I am Law student who goes to the hospital for transfusions every fortnight. I have to take multiple meds for my health and get testosterone treatment for my appearance. I have to work 10 times harder in my studies because I am subject to constant headaches, fatigue and lack of concentration due to my condition. I also have to miss important lectures for my health.

The sad truth is that I can’t tell people here who I really am cause I fear I might have to live my old life all over again. Like many Thalassemia patients, my life expectation is not guaranteed and I want to live life like everyone else. I want to explore, do well in my education, have friends who like me for who I am, and find the one who would love me and my quirky jokes. But only time will tell because, like mentioned above, my life is a book with a series of unfortunate events. My aim to spread the news about Thalassemia and even start an NGO dedicated to Thalassemia patients who need our attention. Cure2Children is a great charity and one of its kind which supports Thalassemia, I am grateful for all that they have done.

I hope those who read this article realise that you all should be grateful for what God has given you and that your parents really are your best friends. There are those whose life is far worse and yet manage. I urge people to read more about Thalassemia, contribute to the cause and even donate blood. A littel effort on your part, can go along way for people like me.