07/08/2017 10:11 BST | Updated 07/08/2017 10:11 BST

On The Challenges Of Living With A Heart Condition


28 years ago, I was born with a congenital heart disease. It's called aortic valve stenosis. Long story short, this is a condition which causes the valve to narrow in the course of time leading to obstructions to blood flow. As a result, the heart needs to work extra hard to keep doing what it's doing. It goes without saying that it comes packed with a range of symptoms that degrade the quality of life. Think chest pain, shortness of breath, weakness, fatigue, difficulty concentrating, palpitations... The list goes on and on.

Not only did my heart defect give me a hard time for a long period but the worst part was that people weren't even aware of it. I looked like a normal healthy girl. They expected me to be filled with energy. Only I wasn't. I had a multitude of symptoms that didn't let me enjoy life the way I wanted to. I was often tired and for the most part I got tired too easily.

Of course, this doesn't really show. I knew it and I felt it, but others had no clue about it. And it was hard to explain or believe because I looked fine. Sometimes I'd spend a whole week "recovering" after a party or a social gathering. That's why I often stayed away from get-togethers. I just didn't think a couple of hours' fun was worth a week full of suffering.

There were many factors that made me want to avoid night outs like the plague. 1) Too much noise. 2) Emotions running high. 3) Cigarette smoke. 4) Believe it or not, the fact that I had to speak in a loud voice because of the music did affect my heart too. Each form of exertion, be it positive or not, made my heart struggle.

Don't get me wrong. It wasn't always bad. I'm talking about the worst moments here, but, of course, I had my good days too. I even attended dance classes. I just took it at my pace. Of course, I wished I could dance more often than I did and that I could go to dance festivals and all.

In my worst moments, I wondered why other people wreck their bodies by drinking alcohol, smoking, and eating the wrong kind of food instead of working out and taking better care of themselves. They had healthy hearts but were taking them for granted. However, later I figured if I didn't have a problem with my heart, I would probably take it for granted too. The ironies of life, I guess. You don't know what you have until it's gone.

I remember a couple of days before I was operated on, the doctors were firing questions at me. They wanted to know how bad it was that I was willing to undergo surgery so young. So, I started vocalizing the symptoms and one of them said: "What else?" And I thought: "Isn't that enough? At least to me it is because it makes me feel bad." To a doctor symptoms are just a means of finding out your body is not working properly; a list which determines how much an illness has developed. Words that people throw around as if they are reading the products on a grocery list. No emotions involved, no feelings attached. But to a patient, symptoms are the ultimate offender, the one that's causing them to cry their eyes out in pain, the difference between feeling good and bad.

To me, each of these symptoms means there are times when I'd rather stay at home because my heart has failed me. That at times I won't able to get a wink of sleep. Or that I may wake up at night from a noise and not be able to fall back asleep. Because a loud sudden noise like the bark of a dog or a car horn wailing helplessly outside can make my heart go crazy, incapable of calming down for hours. Not to mention, every time I am to visit facilities where smoking is allowed, I need to mentally prepare for a difficult and restless night. Because cigarette smoke will haunt me long after I have left the building, triggering a series of palpitations, chest pain and difficulty breathing.

Once the surgery was a thing of the past, I had to face the changes that came with it. Like a scar running across my chest area that showed even when I was wearing blouses with small necklines. And I'd probably have let it affect me, except for the fact that it didn't bother me. At that point, I had been through so much that I couldn't care less about a scar.

I've always felt that if your body goes through a difficult experience and it manages to pull through regardless, then this is not a reason to be ashamed of - on the contrary, this is a reason to celebrate and definitely one to be proud of! The scar clearly shows that your surviving skills rock. If it weren't there, it would probably mean you are dead. And I don't want to be dead!

Three years later, I still have some good days and some bad days. But who doesn't anyway? Being born with a pre-existing condition means it's staying with you till death do you part. But the surgery worked its magic on me. I'm thankful for all the moments that I've had and for being able to live a normal life after all these years. I've created many wonderful memories, I still go to dance classes and enjoy myself at my pace. Life is what you make of it with what you've got, good or bad.

HuffPost UK Lifestyle has launched EveryBody, a new section calling for better equality and inclusivity for people living with disability and invisible illness. The aim is to empower those whose voices are not always heard and redefine attitudes to identity, lifestyle and ability in 2017. We'll be covering all manner of lifestyle topics - from health and fitness to dating, sex and relationships.

We'd love to hear your stories. To blog for the section, please email ukblogteam@huffingtonpost.com with the subject line 'EveryBody'. To flag any issues that are close to your heart, please email natasha.hinde@huffingtonpost.com, again with the subject line 'EveryBody'.

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