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Realizing Lupus Might Affect My Dreams of Working a Full-Time Job

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Looking back at when I was 5 years old, I remember dreaming like most little kids do of a life planned out. I recall thinking I’d be married at around 30 years old just like my parents, have kids and have a full-time job.

I never really thought too hard about what my 20s would look 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 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 I had ever planned went straight out the window — it became time to rethink and reanalyze 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.

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 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 of 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 even though I’m fairly unaffected by lupus, my body can’t cope with being on my feet day after day. 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, I 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, I don’t mind skipping the easy path and I 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 my dream of having a normal, steady job, I won’t just have to work hard — I’ll 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.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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Originally published: December 7, 2016
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