Does Thalassaemia discriminate ?

[nityagupta]

So this article is about how being a Thalassemic is different for males n females. Being an equalist I never saw it in this light earlier. But recently while interacting with fellow Thalassemics, I realised that life was never same for males and females and it does apply to our thal life too. Maybe the problems they face seem same but solutions are not at all same. So to understand more about it I talked to some fellow thals and asked about the physical and social problems they faced. Though from the surface it looks more or less the same, but when u hear their stories it's way too different, I am not saying that life is easy for males in fact it's easy for none of us we all have different issues a whole lot of hurdles. The most common physical issues were osteoporosis, diabetes, splenomegaly, growth issues, same chelation issues(am talking about millenials) . But yes when you look closely the pressures and issues with females are bit intense. In fact even we discuss the level of osteoporosis in males and females that's not even same, being a female makes it bit tiring too. I not gonna talk here about the physicality which we all know females bodies are much much complex than males. So dropping the physical issues, the social expectations from a female is much much more than from a guy which adds a lot of challenges in the mix. Talking about social issues are peer pressure, bullying, settling down which mostly led to brushing up the facts under the carpet and resulting in huge pile of cluttered emotions. More I talked about bullying more I got to know it has nothing to do with eastern / western psychologies, nothing to do with male/female and seriously it doesn't discriminate between disease because it doesn't depend on the condition of the one who is getting bullied but it's the one who is bullying who is suffering from this sick disease. So we will hope all the bullies around the world get their cure soon, because it's they who are ill and unfortunately we are not the medicine you can try your hands on, so please get aside. Then the other social issues that came into mix is settling down what exactly that mean .... only deads settle down, till we are breathing we are alive, lively .... moving. How one is supposed to settle down I don't know, plus when asked, everybody's definition of settling down is different; for some it's marriage, for some having successful career, for some getting a government job, etc. I even asked a friend of mine who is CP( cerebral palsy) patient, and the reply I got was 'standing on my own feet, literally'... so yes don't settle down even you feel you have reached your destination, goal...still one cannot settle down ... So don't take pressure of being settling down as seriously, no one knows how to settle down, whether male or female. Different regions have different social issues, one can only check on oneself, only one knows what he/she is going through, but always keep reminding yourself that no pressure is as big as managing thalassemia. If we can do it, we can manage any damn pressure. And if you are a non thal and reading this then do try to minimize the pressure on your part we really have a lot of things to deal with n dealing with your social pressure shouldn't not be one on our table. Thanks to the volunteers who shared their piece of life with me for this article, Rumaisa, Ayesha, Jatin, and some more who chose to be anonymous. Your inputs not only helped me in writing this articles but also helped me in understanding the underlying issues which Thalassemics faced irrespective of their gender. -Nitya Gupta

[Sharin Khondker]

Hi Nitya, great article. I have a 14 year old daughter and a 10 year old sone both with Thalassemia Major, and I can tell you first had it is so much harder for my daughter, she seems to have gotten the tail end on thal major! She gets spasms and pain everywhere, she has height and growth issues, add to that all the social pressures of being a teenager, it is really tough. We stand there like a helpless parents who could tear out their hearts for their kids, but we can't seem to help her pain go away. Ofcourse we don't want her to become dependant on pain medication, I have seen that putting a warm compress like a hot water bottle helps relieve some of the pain and spasms, some stretching like yoga helps also, and the most helpful thing is to keep them busy with their lives. They are such strong kids and are going through so much, we try to stay as motivated and positive as possible. It is always nice to see articles like yours to know that we are not alone here. Thank you for writing this, and all the best of luck in everything.