What it's like to go through puberty as a boy with thalassemia

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Last year's trip to Abu Dhabi introduced me to people who have thalassemia from all over the world. Tom Koukoulis, the author of today's blog post, was one of those people. He asked if he could write about his experience of going through puberty as a young male growing up with thalassemia. He knows how difficult it can be and wants people to know that they're not alone.

I thought it was a really good topic that is not often talked about, so of course I said "yes." 

Tom's post taught me a lot -- I hope you get as much out of it as I did. Please read it and share your thoughts in the comments section below.

Tom Koukoulis writes about sexuality and life with thalassemia:

I remember having frustrations around puberty and coming of age when I was in high school. We were turning from kids to teenagers. The boys started growing facial hair and their voices deepened. Girls began developing breasts, menstruating, and shaving their armpits and legs. Everyone was a mess of raging hormones.

I remember my friends and I obsessing over who would be next to grow facial hair. We'd talk about how much each girl's breasts had grown. We were turning from asexual kids into sexual adults.

Each day had me painfully looking in the mirror for any sign of puberty. I was watching all of my classmates grow body hair, but I wasn't. I couldn't wait to catch up to them.

I have Thalassaemia, and like most other people with Thalassaemia I had a delayed puberty. While my friends were dating, I didn't feel attractive enough to date. It actually became so severe that I started to hate looking at my own reflection.

I remember avoiding windows or glass doors for fear of seeing my own reflection. I would cringe each time I caught a glimpse of myself, because my reflection didn't match the person I was in my mind.

“Looking at myself was too painful. In my mind I looked different… handsome. But that was not who I would see in my reflection of windows.” - Tom Koukoulis

But then there were the scars... both physical and emotional. Scars on my veins from transfusions, scars on my stomach from nightly iron chelation injections, and a big scar that runs the length of my stomach from my splenectomy (spleen removal) operation.

Some years later, in my twenties, when I had heart failure, I refused the insertion of a port-a-cath, a permanent tube in my chest, meant to administer iron chelation medicine to my heart. This could have been a lethal decision, but it didn't matter. I chose to take the risk of dying over scaring my body again.

More things that weigh on my mind are things like diabetes, which causes a person to hold onto more fat than normal, and gynaecomastia, a condition where men with hormonal imbalances grow breasts. Not necessarily as big as a woman's, but certainly big enough to be visible under clothing and when naked. Gynaecomastia is treatable with plastic surgery, but it's not without complications and adds yet another layer of "imperfection" to one's body image.

At the very extreme end, people who receive inadequate treatment for Thalassaemia also have noticeable bone deformations such as short arms, spinal curvature, and protruding facial bones. I was lucky enough not to have any major bone deformations.

As sexuality and feeling attractive go hand-in-hand with body image, it’s not illogical that I felt very unattractive. It’s also not illogical that I felt unworthy of being wanted. I did not feel like a sexual being. I felt I did not deserve to be seen as such -- a sexual being worthy of being wanted and attracted to other people.

Although hormonal imbalances are usually treated adequately in some parts of the world, testosterone deficiency may cause loss of libido in men with thalassaemia. Also those with diabetes may experience erectile dysfunction, which has an impact on sexuality and confidence.

Similarly hormonal imbalances in women can affect menstruation which is one of the differentiating factors of someone feeling like a woman or a girl. On an emotional level those physical deviations may have an impact on the perception of one's self -- particularly in feeling like a sexual adult versus someone who is prepubescent.

Currently, blood transfusions are safe in most parts of the world, but that wasn't the case two decades ago. Some people have contracted Hepatitis C and HIV, which apart from the physical health implications can affect intimate relationships as well as that person's perception of sexual worth. Even though both of those conditions are treatable and the risk of transmission can become negligible, their ever-presence still emotionally impacts the person affected and their relationships.

When I talk to my friends with Thalassaemia, they more often than not mention some of the above and how they feel it is impacting their sex and love lives.

The daily management of Thalassaemia, the constant hospital visits, the nightly infusions, needles, etc. may affect interpersonal relationships and challenge a person's confidence and sexual self-worth.

I don't use Desferal anymore and some of the scars have healed, some scars though, like the surgical ones, are still there. And I guess some of the emotional ones are too.

I have come a long way since I was a teenager and I've worked with these issues. One event I can remember sparked off a process of overcoming the issue about my physical scars.

I was on holiday on a Greek island and saw a guy on the beach with a scar more prominent than mine and he didn't give 2p about it. I thought 'if he doesn't worry about it, why should I?' And that really helped set the process of healing in motion.

In the years that followed I have had psychotherapy to help me sort out my worries. Even though it may not be for everyone, it has helped me to a degree. I have also read some good personal improvement books “Mind Over Medicine,” “Awaken the Giant Within,” “The Power of Positive Thinking” and did quite a bit of work on my self.

I have learned to have compassion for myself. I don't avoid glass doors or windows anymore. Sometimes, nowadays, I even think I look cute when I catch a glimpse of my reflection!

But I don't think I have completely overcome those issues. They are still there somewhere and they crop up every now and then. I've acknowledged them and embraced them and they are part of who I am. What makes me <em>myself</em>. They have played a major part in how I have defined my sexuality and how I behave when I'm with intimate with someone.

"We should remember that anyone with Thalassaemia (or any other chronic illness) can deservedly be a sexual being." - Tom Koukoulis

A very important part of the healing process is to acknowledge the ill-effects a long-term condition has on your psyche. We should remember that anyone with Thalassaemia (or any other chronic illness) can deservedly be a sexual being.

Tom Koukoulis lives with Beta Thalassaemia Major. He resides in London, UK and works as a Software Engineer. He also works with Thalassaemia charities in the UK and abroad to promote awareness of the condition and improve treatment for people with Thalassaemia and Sickle Cell Anaemia.

Thank you for being courageous and beautiful, Tom,


This post originally appeared on josephinebila.com on Tue, 16 Dec 2014.