A few years back, it was becoming difficult to breathe on my own. I could no longer walk or stay away from oxygen support.
I was not ready to accept that this will be the reality for the rest of my life. I was hoping to find some solution so I visited another doctor.
But this doctor told me that this is how it will be now. I will have to be on oxygen support all the time.
I was so furious at that time that I stormed out of his office. My daughter feared me getting violent that day. But I had no choice.
I want to move on my own, dance, sing, take responsibilities, and enjoy life like I used to.
But I cannot…
Internally it feels horrible, even inferior sometimes. But I do such a great job at hiding it that no one gets a hint.
Instead, I face scepticisms from people like “She is acting, in reality, she is not that sick. She is showing off my money carrying these expensive oxygen machines and all.”
As if oxygen is a luxury.
I fail to understand why would I choose such a messy, tedious and challenging disease? Simply to gain sympathy?
I’m bringing this point up because it’s a common problem I face every day. And apparently, a lot of people face it on daily basis.
I’m very active on social media for some time now. Even when I post every day on social media people think I’m doing this for publicity. Sometimes I get random video calls. People want to check if I am wearing this oxygen pipe only for the camera or I really use it 24 hours.
I don’t mind it actually. Every person looks at the world with their own set of lenses. So, it’s no one’s fault.
I like to call these conditions “invisible diseases”. Challenges like colour blindness, lung diseases, thyroid, hormonal problems, etc. are part of it.
One of the most challenging aspects of having such invisible diseases is that they are usually neglected or rarely understood by others. These are experiential situations. That’s why at max people can sympathise with us but not empathise…
This applies to everyone around us. Our friends, family, relatives, colleagues, employers, neighbours, hospital staff, doctors, or even readers like you. It becomes beyond the comprehension of an unaffected person that there are things that are physically impossible for us to do now.
And mentally every time the reality strikes us when we have to ask for assistance in trivial things. I can’t begin to explain in words how much self-respect do we sacrifice.
It’s like double victimisation.
“I wish I could show you my lungs but I’d rather show you my shinning smile” – Madhu Vyas
No one wants to be sick and in pain. Everybody wants to live with dignity and self-sufficiency.
All we need is some compassion, which can only be inculcated if people around us are educated about lung health, its effects, the challenges and trauma.
But it is a grand effort to achieve this. I am doing my part in it by The Breathing Warrior Movement which is dedicated to:
1. Enable 10 million people to redesign their Life with long-term Breathing Problems to improve their quality of life by adapting to a resilient and resourceful approach towards life.
2. Build a community to bring people together. Everyone can share their life experiences – to know that they are not alone and also to help others as well as receive helping hands.
3. Educate everyone who crosses my path about the importance and challenges related to the most important aspect of life, i.e., Breathing.
Also, I am launching my book regarding this very soon.
I believe “No physical capacity can limit the power of the human spirit”.
I encourage you to come together and do your bit by contributing your emotions and time to this great cause and become a proudly compassionate “Breathing Warrior”.