Russia Egmalis

Written by Russia Egmalis

MAY 10, 2018

When the universe hands you a life-threatening diagnosis, you stop fearing death itself, and the thought of not being able to truly fulfill your dreams concerns you more. You start feeling that there’s an expiry date on all of your life goals. The thing is, you don’t know when that date is, all you know is that it comes sooner than you’d like, so much sooner than you could possibly prepare for. So then you have to prioritize, and everything starts to feel urgent and intense.

Being sick doesn’t diminish your desire to go after your ambitions. What makes me different from a healthy individual is that you have the freedom to pursue them recklessly, whereas I am painfully aware of all the risks (as well as the corresponding consequences) I have to take in pursuing my own. I’ve always been willing to work hard for what I want, and that always comes at a price, but when there’s something off with your health, it takes its toll on a grander scale than it should.

Battling Through

One of the biggest sacrifices I’ve had to make was giving up my full-time job as a teacher to focus on my health. At that time, I was newly diagnosed with Systemic Lupus Erythematosus and just started out my treatments. Unfortunately my job - the environment and the stress that came with it - was interfering with my recovery.

After about a month of bed rest, I chose to go back to work. I was advised to take on more flexible jobs, preferably home-based that placed me in an environment where I wasn’t so exposed to triggers such as stress, sunlight, and infections. Finding a job is hard enough, but finding one when you have a medical condition makes it all the more challenging.

People react differently when you tell them that you have that you are a Person With Disability (PWD) and yes - they might treat you differently as well. On the extremes it can be seen as a crutch - marking you as a liability. On the the other hand, others patronize you based solely on your decision to work despite your disability. Perhaps this is because not everybody is familiar with Lupus or invisible illnesses like it. I once sat through an interview where the trainer over-enthusiastically praised me for being strong instead of giving me actual feedback on my teaching demonstration. In another, I had to explain what my illness was exactly and how it might affect my performance.

I choose to be upfront about my illness; although I didn’t want to be solely identified by it, that was the way I could confront it out in the open. Also, I personally needed help, especially in the first year of adjusting to my life as a patient, so I asked for it. It was still a struggle, but having a system of support made it a little more bearable.

My friends and family financed my medical bills throughout that period I could not work. When I was ready to re-enter the workforce, they helped me get back on my feet with words of encouragement and referrals that landed me the part-time jobs I hold today.

When you’re suffering from a chronic physical illness such as Lupus, it’s important to be surrounded by people who understand that when you say “hold on," or “I can’t do it anymore,” it means more than carrying around a defeatist attitude or a negative outlook on life. All too often I hear people throw around the phrases “Suck it up” and “Just do it.” Though those are real novice notions that could be said with the best of intentions - it doesn’t always work.

Sometimes your body is defective, and even you don’t have control over how it ultimately functions, no matter how much you beat it over the head with positive mantras. When I say ‘I can’t’, it’s not that I don’t want to, it’s that my body is telling me that I can’t handle any more. I want to believe in the whole mind over matter mentality - I do. But I’ve had way too many breakdowns in trying to will my body to get stronger that I have become familiar with what it is and isn’t capable of.

I am grateful that the people I work for now are considerate when it comes to my condition, because I know that not everyone will be. There will also be times when Lupus carries out a sneak attack that renders you indisposed for hours. Sadly you have no choice but to follow the commands of the most demanding boss you could have: your own body.

Sacrifice and compromise become key in decision making, because there tends to be a divide between what you want to do, and what is good for your health.

Dreams, Disease, and Disability

Giving up a full-time job with benefits for 3 part-time jobs wasn’t what I had initially intended. In a lot of ways my diagnosis derailed many of the plans I had laid out and essentially made me question the progression of my career. In this race against my own body clock, it feels like I have to tick off as many boxes in my bucket list as possible while my body still allows me to do so. Some people work better under pressure, and the time crunch that came with my diagnosis certainly made me realize what it is I REALLY wanted to do.

As a patient, you learn to work around your “disabilities” but that’s difficult to do without first acknowledging them. There is no formula in overcoming the challenges of working as a “PWD” or “differently-abled individual” or a “Lupus Patient.” No matter which label you prefer, the significance of it remains to be acknowledged: “I have a medical condition.” You might opt to keep the truth about your disease a secret, and that’s your prerogative, but it’s important that YOU know what your limitations are and that you listen to your body when it calls out for you to stop or slow down. You also have to remember that you can’t control those around you or how they react to your condition. A lot of the times they don’t understand what it is your going through, and ultimately you have the choice on how you are going to let it affect you.

When you are sick, your health issues are going to weigh in on any major decision you have, no matter how ardently your mind wants you to push forward with your career. However, that certainly shouldn’t keep you from pursuing your dreams and fulfilling your ambitions. It just means that you might have to be extra cautious along the way.

MAY 10, 2018