The Rare Balance: Career vs. Condition

How to go about approaching jobs (THE CAREER) when you have a rare disease (THE CONDITION). It's difficult and you are often in a conundrum. Can you make it? Do you have what it takes to go full time? To commit? The pressure of a job, etc. And without realizing you start to evaluate job options not based on your talent, skills or interests, but based on the kind of condition you have. Your option matrix soon starts taking mental notes like will it take more toll on my physical health, or my mental health as you are already fully stretched out both mentally and physically. You start to develop a fair idea of the balance you want to strike!

?For general readers let me expand on the TOLL bit.

?So here it goes, a story of a person named R, why R? Because they are RARE.

?R as a University student is going through a lot. R keeps on falling sick, literally every six to eight weeks. R has done hundreds of antibiotic courses all throughout their life. For R popping steroids is like eating Skittles or Smarties. R misses quizzes and classes regularly because they need time to recharge. They have missed mid-terms, or they were not prepared for the midterms because they were unwell. Simply put while others cruise through a typical day, R is paying a toll tax every day to get ready for the next one.?

?And when R has all of this going on and yet lands the first big job, it's not the excitement that kicks in, but? they often find themselves in a sea of unknown questions with no lifeboats or guards around. Will I be able to make it? Umm cross that, will I be able to survive among people who are 100% fit, who can put in more hours, who can bring more mental and physical energy on the table. Will I be able to compete with the world which offers MORE? And that's when an option matrix starts to take shape. You are in constant division; shall I go for it? ShalI I adjust my expectations. And that's where the 22 year old R thinks about the equality in life . R's equilibrium in life is significantly disturbed.

The world of unequal's, my bad deck of cards, the worst possible hand, blah blah. Why does somebody have to make a choice that "will they go after a full-time international career in a leading FMCG company" or? settle down to a slow-paced job, which is closer to home, closer to friends, closer to family. So that God forbid, If they fall sick, they have people to rely on. I am not R, not even close, In my case, Uh, ignorance was a bliss, because I thought, okay, I'm getting sicker but every doctor that I have met has told me that asthma gets better as you progress with life, sinus gets better (Remember I was only diagnosed at 34! R knows it from day 1).

I never knew that one by one, all the symptoms of PCD would unfold. It's not like your born with all the symptoms on day 1. In my case, I got to know things over the years. We will talk more about how I got to know I have PCD some other day. But I think for me the biggest blessing was that I didn't know what the future holds for me. Uh, what will happen to me in five years, what will happen to me in 10 years because I never knew that I had PCD to begin with.

The point that I'm trying to land here with anyone who is in a university and suffers from a rare condition, take it one step at a time. Take baby steps. Let's do it on the go. What's the worst that can happen? You fail in a years' time? And you think that probably your body is not responding as well as you want it to? A thought kicks in that you leave the dream gig, and you settle back for less but atleast you would have experienced it for a year. We are fighters, Rs are tiny but mighty fighters they THRIVE!?

Hence for the very first attempt we should go all out. R should have the same opportunities as the rest of Rs batchmates. R must apply for the best jobs, jobs that everyone else dreams of. That's the only way R can achieve some sort of equilibrium in life.

I had it easier than R. My biggest blessing was my ignorance. I never knew that in 10 years I will have an irreversible damage in my lungs, I would start to lose my hearing and never have kids. I didn't know that from day one, but at least that's why I was able to jump in and will continue to go all in. I have done it for 15 years straight and will do for minimum 15 more years.

I went all in with my first job, and it wasn't easy. When people are worried about how to carry themselves, how to go about presentations, how to land a good first impression. My very first worry was not to have a sick day at work. All my energy was dedicated towards my work, like my entire life was go to work, come back recharge, go back work again and that takes a huge toll on you mentally when you do it day in day out.

What I have now learnt is that the toll could have been reduced if I was diagnosed earlier, because if you are on a right treatment plan, you have much more in you to give to your work, your friends and your relationship. Now imagine that you can go to work, you can come back even at six or seven, you still have enough energy to spend good quality 4 hours with your friends and family and that's what makes all the difference because that's how you recharge. That's how you have your energy levels back up again. That's how you don't get into this constant debate of, oh if I fall sick what will happen then?

Because you know, that you have a strong enough treatment plan with you, which will keep you healthy, even if you fall sick, you will recover back very very quickly. It will be like a 14 day antibiotic course, done via IVs. But after the very first four days, you are back to normal and then these IVs can be adjusted around your work schedule; you can take one before work, you can take one right after work and then one can be done before you go to sleep. Yes, it's not exactly split eight hours into three but it's very very close. If you know that you have PCD then no matter what goes wrong you will bounce back because you have bounced back every time in first 22 years, that’s how resilient an R is.?

So, the big question if I was R would I do it what I did for the last 15 years and aim to do for next 15. YESSS!

R is more enabled than me, R knows about the condition, R knows about the best treatment plan. R is surrounded by loved ones and medical marvels. All I had was ignorance, R has much MORE. MORE solve for the equilibrium that R wants. (oooh deep)

So, trust your instinct, trust the support network around you (we will talk about the support network some other day too) and go all in. That would be my humble, humble advice. For people who want to start careers in leading firms and are often scared or willing to settle for less in life because they have a rare health condition. Believe me? It's a gift. It's not a barrier.

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WizByRiz

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