Patients’ stories


I don’t want to sound preachy at all, the reason why am writing this article is recently I overheard I apologize for it, two mothers of Thalassemia patients talking “I never share his Thalassaemia status with anybody, look at him, her son,he looks so normal”, though I never gonna know what’s the yardstick to measure the normality. Anyway so she kept on blabbering and I don’t know what she said after that as I lost my interest right there.

So now coming back to my article. I believe it’s this kind of thinking and views which we scare of…we don’t scare of our Thalassaemia status, we are afraid of people being judgmental … No matter it’s us or a fat or a short or a dark girl/guy, why we make a mind about normality ? … Our body is one of those things we don’t choose, we never got a chance to choose. I am not criticizing the mothers as I am not in their shoe they must have their own reasons, but I felt sad that how we spread discrimination even by avoiding it….

I am not saying we should share our Thalassaemia status with every other being in fact being a Thalassaemic is just like our any other character nothing to flaunt or hide off , it’s our personal choice whether we want to share or not. We can’t force anybody or even should not force, as that too can be counted for being judgmental but we should try to be truthful to ourselves, brushing the fact under the carpet is never a solution. But it should be our choice completely not due to society or any other influence.

I remember in my college days how I used to work hard just to prove myself that Thalassaemics are better than so called normal kids and all, but then later I realised what I was doing, why in fact was I doing it and that on the stake of my health I started avoiding desferal just for being a topper, I topped and what I got was a gold medal and a really high ferritin value which I am still trying to get under control. I don’t mean that I shouldn’t have worked hard for marks but I should have managed both the things, chelation should never be taken for granted under any circumstances. And that to prove oneself better is the worst thing one can do. Because sometimes while brushing the real fact under the carpet we too start avoiding it.

When the real problem starts we have to understand that we are Thalassaemics, we need to manage it not avoid it, proper chelation proper management and self acceptance and then one can see the difference, at least one can hope that there will be a difference. Our condition really demands our proper attention only then we can be happy our bodies can be happy and when we are happy we can achieve any damn thing. So keep chelating, keep appreciating you and keep loving yourself because nobody can love you better than you.

By Nitya Gupta

Schaltfläche "Zurück zum Anfang"