Persevering in a New Reality

Persevering in a New Reality
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After being diagnosed with granulomatosis with polyangiitis, I felt like life as I knew it was over, and a new reality was emerging.

When I was diagnosed, I was a 19-year-old sophomore in college. I missed the last half of fall semester, and it was possible that I would miss the spring semester as well. But I am stubborn. As sick as I was, I was absolutely determined to get my life back on track. So, I went back for the spring semester of my sophomore year and continued my job as a resident assistant (RA).

Sometimes I wonder how I did any of that. I was on prednisone and Cytoxan (cyclophosphamide), both of which hit me with brutal side effects. I was exhausted all the time, but I was 19 and just couldn’t accept the fact that I was sick. I fought through everything just to try to have a normal college life, though I missed some events because I was just too fatigued.

The most difficult part was that no one really seemed to believe that I was sick. I was overweight, and the symptoms that people could see — shortness of breath, tiredness, moon face — could all be attributed to my weight. Strangely enough, the people who believed me were the other students, while it was rather difficult to get the older adults to understand.

The worst experience was with my boss, the resident assistant manager. The week all of the RAs returned — about six weeks after I almost died — we had to take part in a ropes course for team-building exercises. I told my boss I couldn’t participate, and I explained why. He replied that I wouldn’t be an RA anymore if I didn’t take part, and accused me of not being a team player.

So, I cried. I was hit with the reality that this condition would impact other aspects of my life, not just my health, and that there would be people with authority over me who didn’t believe me or care. It was humiliating to be accused of not being a team player and devastating to think I couldn’t be an RA.

I felt stuck, but I went to the ropes course because I so badly wanted to have the position and pursue a normal life. The course was brutal. I couldn’t do anything without losing my breath or having pain. Thankfully, my fellow RAs understood the situation and helped me get through the day.

In the end, that boss was fired for a variety of reasons, including how he treated me. His replacement was very understanding of my situation, so I continued to be an RA, and absolutely loved it.

I battled an invisible illness for my last two and a half years of college, refusing to let it win. After I accepted my situation and got used to the meds, side effects, and symptoms of my condition, I thrived. I was an RA through my senior year and got voted RA of the Year. As president of the honor society, I traveled to a convention to give a presentation. I was the editor of the literary magazine, plus the Journalism Student of the Year. In the end, I graduated summa cum laude with a 3.8 GPA and a degree in journalism. All of that didn’t take me longer than four years.

I am not saying all this to brag but to show — especially to anyone as young as I was at diagnosis — that even though I have this condition and nearly died, I came back. I found hope.

***

Note: ANCA Vasculitis News 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 ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.

Sandra (or Sandy) was diagnosed with granulomatosis with polyangiitis, formerly known as Wegener’s granulomatosis, in 2001 at age 19. After living in various states in the Southern U.S. since graduating from college, she now lives in her childhood home in Virginia. She has a degree in journalism and has worked for various newspapers as an editor and designer since 2004. When not working, she enjoys playing video games, relaxing, writing in her blog, and collecting hats. She hopes to spread awareness of her condition while also letting those who have it know they aren’t alone.
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Sandra (or Sandy) was diagnosed with granulomatosis with polyangiitis, formerly known as Wegener’s granulomatosis, in 2001 at age 19. After living in various states in the Southern U.S. since graduating from college, she now lives in her childhood home in Virginia. She has a degree in journalism and has worked for various newspapers as an editor and designer since 2004. When not working, she enjoys playing video games, relaxing, writing in her blog, and collecting hats. She hopes to spread awareness of her condition while also letting those who have it know they aren’t alone.
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2 comments

  1. Vic Cross. says:

    AV. @ 77. (2017) eGFR 11. Anemic lots of meds. eGFR now 19/20. Knackered all the time. Muscles ache constantly. Always out of breath. Sex life gone. Stage 4 CKD.
    Life goes on.

  2. JOHN A WALL says:

    Inspiring story. I was fortunate (used loosely) in that I was diagnosed when I had just one year of work left till I retired. I hoped I could make it, and worked hard, at my job, fulfilling as many of my responsibilities as possible. I feel ever so badly for the many young people (such as Sandra) I read about who contract this illness. My life isn’t over but I can enjoy not having to push myself to get through school or work. I can rest when I want throughout the day. Stay strong Sandra.

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