Those of us who live with a rare medical condition are often seen, but not heard.
It’s very common to feel like we’re surrounded by people who have an opinion about us, like doctors with their diagnoses, but as patients, we’re rarely given the time and space to be heard.
That’s one of the reasons why I started blogging. I want to share my experiences and learnings, as well as the voices of others from around the world.
If you have life lessons that you’d like to share with my readers, please email me at info (at) josephinebila (dot) com.
Today’s blog post comes from a young woman named Nitya Gupta who reached out to me on Facebook.
She had asked me for advice on diet and exercise, then we started chatting about other things.
Nitya’s life story is interesting to me. So, I asked her to share some of it with my audience.
She agreed and ended up writing an inspiring article that hopefully challenges people to take care of themselves.
So, please share your comments in the section below. I know that Nitya looks forward to hearing from you.
Here’s what Nitya has to say:
Living with Thalassemia in India is no less than living in hell, one would say.
For any thalassemic, life is full of contestant pain and fear, but living in a country like India makes it even more difficult.
India is a country where very little to no money is spent on research, development, or awareness of such rare blood disorder.
My name is Nitya Gupta and I am a 24 year old engineer turned footwear designer.
Like other Thalassemia patients, I have spent more of my early childhood days in hospitals than at home.
Life is much better now thanks to a leukocyte filter which wasn’t available (nor did we even know of its existence) in the 90’s.
Why is it so hard here in India you ask?
As I mentioned before, not only because of lack of research and development, but also because of lack of awareness.Most of the time, one has to explain what Thalassemia is to their physician before moving forward with tests.
Yes! Shocking but all true.
I still remember how I had my initial blood transfusion: I would spread a sheet on the floor of the hospital balcony, because hospital beds were over capacity.
These conditions are more frequent than a patient would like for it to be.
Then there was yet another challenge in the mix: availability of blood.
India, being the most populated and mostly educated class (yes, I believe we are), are still a society full of people who do not believe in donation such as blood or organ.
There have been times where I did not get a transfusion when I needed to because of blood shortage.
“Blood isn’t available” is probably the most fearful phrase for a Thalassemia patient… but YES it happens to us.
In a nation where everything is a race and a competition, one is expected to “make it” regardless of his/her health conditions.
I was no different. As part of this nation, I too was expected to be as “normal” as the other guy.
Maybe someday someone will sit me down to explain what “normal” is and who has the measuring stick for “normal.”
So here I was, a Gold Medalist Master Student, trying to be as “normal” as I could.
I was almost debarred for being a little short on my attendance — just another challenge of being an Indian, living in India, with Thalassemia.
However, thanks to the gold medal on my record, I had an opportunity to work with a renowned footwear company.
It was great but short lived as my body started demanding more…
I found out that I have an enlarged spleen, which started to ask for more attention and care than I was ready for at the time.
Here was the point in life where new goals were to be set and new decisions were to be made.
I suddenly had a new goal and it was the most important one I will ever have to achieve: survival.
My job was now taking second place to the fear of losing my identity. My place that I had worked so hard to obtain was wavering.
At the end, my medical condition won and I had to depart from the job that I had grown to love, making it feel like my dreams had been shattered and my whole world collapsed.
Now I had a new job, a full time job of taking care of myself.
I have started working on myself from beginning to end. From diet… to exercise… to chelation. A BRAND NEW BEGINNING.
There’s a quote from my favorite book “The Fault in Our Stars,” by John Green that I’d like to share. It reads, “Pain must be felt.”
So here I am living my favorite book, from the time I was created and took my first breath.
It’s 2015, but my life is stuck back in 2005. I am still dependent only on desferal. It’s now part of my life, along with sleepless nights, painful scars, itchy skin, swollen thighs and just pain… inside out.
Blood transfusions come with fear and possibilities of many reactions or infections. Tachycardia, urticaria, backaches, and fever and much more.
This is all part of the package… a part of my life. A Thalassemia life.
We all have dreams, we all have complications, and we all need to just manage them ourselves.
It’s the unknown challenges that you didn’t sign up for that makes it even more difficult.
Your achievements cannot reduce pain, but it can soothe the pain for a little while.
So keep setting goals, no matter how small or big. Keep achieving them.. keep reaching for them… not for anyone else but for YOU.
Every Thal (Thalassemia patient) goes through a number of complications and I have had my share.
From fungal sinusitis, eyes with lacrimal sac, enlarged spleen, to a hyperactive thyroid gland (to name few).
But after going through all this, I have realized none of these can dominate over your chelation regime.
If these complications can’t stop you from being transfused, then why let them hinder chelation?
Whatever may come tomorrow for me, whatever my fate, I will fight to make sure I make my tomorrow a little better than today.
I suggest the same for everyone out there. I am not here to give any advice, as everyone knows oneself better for him or herself than anyone else.
However, if you are down and feel like Almighty has not been kind, read yourself Stephen Hawking’s biography, “My Brief History.” It has helped me and I am sure you will find some if not all of your answers there.
Again, I am not preaching or giving advice, I am just sharing.
As they say it’s not over until it’s over SO until next time, keep chelating, keep taking care of you, keep reading… and more than ever… KEEP LOVING AND LIVING!
Feel free to reach out to me on Facebook: facebook.com/nitya.gupta.376.
Please share this article with a friend or loved one might enjoy reading this story.
To your health,
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