Dream or Reality? Working Full-time with Lupus

Dream or Reality? Working Full-time with Lupus
dream

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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.

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Kristiana “Kristi” Page is a surfer, barista and university student studying an Arts/Science Degree in Philosophy/Mathematical Modelling. Living on the picturesque Bellarine Peninsula on the South-East coast of Australia, she’s deeply passionate about salt water in all forms, amazing coffee – even though she’s not allowed to drink it – and above all else traveling the world: one country at a time! Diagnosed with Stage IV: Lupus Nephritis at 20, she’s determined to not be defined by her auto-immune condition. Using writing as a medium for self-expression she hopes to share her life and journey to both raise awareness and support others in similar situations! A big believer in the concept of dialectics, she loves to share her usually unorthodox – and sometimes controversial – views with the world; and in turn have others share theirs with her. Quirky by choice, inquisitive by nature and above all else: smiling, always!

6 comments

  1. Andree says:

    I have struggled to work since diagnosed about 15 years ago. Have had times I can work and then am put off by a flare. I am fortunate that I was just finishing my university career when I was diagnosed. I don’t think I could do the work today. Between the fatigue, pain and mind fog it is a daily struggle. I have been off work now for over a year and do not know what the future will hold regarding a career and work but for now am taking a day at a time. Take Care of yourself, listen to your body and rest when you need it.

    • Kristiana Page says:

      I admit that with my first year of university this last ten months I have struggled from time to time. Everyone else in my degree is completing 8 units a year whilst working as well, I’ll only be lucky if I can complete more than 4 and working a few days a week.
      I’ve managed to work out what I can handle without putting unnecessary amounts of stress on my mind and body, it may not be as much as every body else but that doesn’t matter. I don’t worry about trying to justify anything to anybody else I know what I need to be healthy and I won’t put myself second just to please society.
      I wish you the best with everything and hope that you’re able to find something that works in with your life! X

  2. Rebecca Jones says:

    You can do it! I was diagnosed with lupus 8 years ago and still managed to have 2 healthy kids and I work full time. I do work at a desk (so I’m not on my feet) but I live in NYC and have to commute in and out every day (which is strenuous). Some days I feel like I can’t possibly make it but I just put my head down and keep moving. I have learned that we are capable of so much more than we thought. Our bodies may rebel against us but we have our minds and your will has to be iron strong when dealing with lupus and a full time profession. Also, I tend to spend every weekend resting and preparing for the week ahead. Good luck!

    • Kristiana Page says:

      I haven’t been diagnosed for very long and sometimes I can’t help but feel deflated at the likely prospect that I’ll be unable to achieve as much as I wanted or what everyone else can career-wise.
      You give me so much hope and have reminded me just how much I know I’m capable of – and that I should never believe otherwise.
      I’ll remember this comment for a long time to come.

      I really needed to hear that. Thank-you. X

  3. Kate Alvarez says:

    I was diagnosed with lupus nephritis six years ago and had a major flare once. I still under immunosuppressants but I work full time as a junior high school science teacher. I also have girl scout troop under me as a troop leader. I am 9 units away from finally completing my masters degree. I have a daughter too! Just like what Ms. Rebecca Jones, I want to assure you that it is possible and you can do it. Stay positive and keep cells happy. Our immune system is unpredictable yes, but our future need not be. Go for your dream job and do not limit yourself. Just don’t forget about work-life balance too. I devote a me time always. Cheers! 😉

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