Thalassaemia and sexuality

I remember the frustrations around puberty and coming of age, when I was in high school. We were turning from kids to teenagers. The boys would start growing facial hair and their voices would deepen. The girls would begin developing breasts, menstruating, and shaving their armpits and legs. And everyone was a mess of their raging hormones.

We, guys, were obsessing over who would be next to start growing facial hair. We’d talk about how much each girl’s breasts had grown. We were turning from asexual children to sexual beings.

Each day had me painfully looking at the mirror for any signs of puberty. I was watching all of my classmates grow body hair, but I wasn’t; I couldn’t wait to catch up with 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 was even avoiding to go anywhere near windows or glass doors for fear of seeing my own reflection. Each time I would catch a glimpse of myself, I would cringe inside. The person I would see reflected in the window did not look like 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 the windows.

And then there were the scars, physical as well as emotional. Scars on my veins from transfusions, scars on my tummy from nightly iron chelation injections of Desferal, and a big scar that runs the length of my abdomen from my splenectomy operation, a surgery to remove my spleen.

In my twenties, when I had a heart failure, I refused the insertion of a port-a-cath, a permanent tube in my chest to administer the iron chelation medication straight into my heart. This was a potentially fatal decision, but I was dreading yet another scar. I chose to take the risk of dying over having my body scarred again.

In addition many people with Thalassaemia have diabetes or pre-diabetes, which makes them put on more fat than normal. Also, because of hormonal imbalances men can develop a condition called gynaecomastia, which means they can grow breasts, not necessarily as large 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 where present adds yet another layer to one’s body image issues.

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 in men can cause changes in the normal development of their body. 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 feeling like a sexual adult versus someone 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 constant presence, still impacts a person’s emotions as well as 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 and the constant hospital visits, nightly infusions, needles, etc. may affect interpersonal relationships and challenge a persons 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 too. I have come a long way since I was a teenager and I’ve worked with these issues. One event I can remember that sparked of a process of overcoming the issue about my physical scars, was when 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 and even though it may not be for everyone it has helped me to a degree. I have also read some good personal improvement books and done quite a bit of awareness work. 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 myself. They have played a major part in how I have defined my sexuality and how I behave when I’m with intimate with someone.

A very important part of the healing process is to acknowledge the effect of a long term condition on your psyche; and to also acknowledge that someone with Thalassaemia 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.

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