Dream or Reality? Working Full-time with Lupus

Looking back at when I was five years old, I remember dreaming like most little kids do of a life planned out. I recall thinking that I’d be married at around 30 years old just like my parents, have kids, and a full-time job.

I never really thought too hard about exactly what my 20s would be like, but I expected those years to be what society depicts: a time to explore myself, grow as a person, and make mistakes without much consequence.

I knew that eventually I’d have to get my act together, get a stable job, and be a proper adult because that’s what you do in your late 20s and 30s. But I didn’t plan to worry about that until I was on the other side of 25.

This year everything in my dream and everything that I’d ever planned went straight out the window — it became time to rethink and reanalyse everything my life would one day be.

I can still have most of what I want in life if I am prepared to redefine my expectations and work hard for it. But recently I’ve come to realize that even the possibility of holding down a full-time job will be a gargantuan battle, if it’s even feasible at all.

At the moment, I’m on heavy doses of immunosuppressant medication but, while they aid me in making my lupus as dormant as possible, they’ll never take away all the side-effects of living with chronic illness.

Nothing will ever save me from this perpetual trance of tiredness. Nothing will ever stop me from wearing down much faster than the average person. And never again will I know what it’s like to wake-up in the morning feeling refreshed and ready to tackle whatever’s put in front of me without also feeling residual effects from previous days.

Right now I can only study part-time because I can’t keep up with the work and readings required at the university. The stress of full-time study is just too much for me to handle on top of everyday life and casual work.

Chosen career may be an impossible dream

At this point in time, I probably won’t finish my degree for another seven years. Even by the time I finish school there’s no guarantee that I’ll be able to cope with a job in my chosen career path — assuming someone is willing to hire me.

When I think about this part of what my illness brings, it makes me scared and angry.

I’m scared because there is no certainty. I started this year with hopes for becoming a primary teacher. Changing my mind just before my diagnosis was fine because I still had all the options in the world open to  me.

But when I was diagnosed it felt like all of my energy and this infinite range of opportunity was stolen from me.

I won’t have the option to work in a career that is overly physical because already, though I’m fairly unaffected by lupus, my body can’t cope with day-after-day of being on my feet. This severely limits options for future employment, and it makes me feel as if I’ve been cheated and forced into a box.

I’m angry because it took hard work to get where I am academically. I was and still am a good student, have always put in a lot of effort throughout all my schooling and now, no matter how hard I study, how original my essay ideas are, or how high I achieve, it might not matter.

I’ve never been afraid of facing adversity or confrontation, don’t mind skipping the easy path, and am very aware that life is unfair to each and every one of us.

But for someone who has achieved pretty much everything I’ve wanted athletically and academically, it’s hard to accept that from now on if I want to realize a dream as normal as having steady job I don’t just have to work hard — I have to fight myself and defy all odds for the rest of my life.

When I was little, I always assumed the toughest hurdle I would face would be the outside world. This year I learned that my greatest obstacle will never be out of reach because it lives within.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.