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When Lupus Decides to Give You a Big Ol' 'Eff You'

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There are so many things that are hard about being chronically ill. There’s the pain, the fatigue, the questioning looks when I’m out with my cane or crutches. There’s deciding on what treatment is the best option for you.

There’s the nausea, headache, body aches, dry mouth, and so on of the side effects of these meds that are supposedly going to make you feel better in the long run. But the hardest part of chronic illness for me is the unpredictability.

Everyone’s life has unpredictability. It is part of the human experience. We never know what the next day is going to hold. Unpredictability is the root of sayings such as, “Live every day as if it’s your last.” Before I was ill, I loved unpredictability. I loved not knowing what was going to happen, or who I was going to meet in the next moment. I loved not being able to see my future mapped out in front of me. Sure, I had plans — I’m a type A personality. I always have plans. But I had plans for if this happened, plans for if that happened, plans for if I didn’t want to do any of the things that I had mapped out.

And then I got really ill. I had had symptoms for about four years, but they were mild enough that my doctors and family ignored them. I tried to, too. But, after four years of ignoring, lupus finally reared it’s ugly head enough that I became disabled. I didn’t call it that then, but I couldn’t climb stairs. I had to use the accessible bathroom so I could get off a toilet. I couldn’t stand or sit longer than 30 minutes. I was disabled and I finally got my diagnosis – systemic lupus erythematosus. My doctor assured my family that it probably wouldn’t progress with treatment. So, I started a pill that made me a little nauseous and occasionally made me dizzy and tried my hardest to forget I was ill.

I made plans to travel and to live in foreign countries. I learned French and Spanish, and planned to learn Arabic. I had a plan to be fluent in those languages by the time I turned 30. I had plans to become a nurse and help people in countries who didn’t have access to medical care. I had plans.

Three years after my diagnosis, I was 500 miles away from my home watching my best friend get married. I’d not been feeling great and was already on a steroid taper from the stress of final exams. My sleep was minimal, last minute wedding planning was stressful, and alcohol and lupus never get along in my story. I woke up the night after with chest pain and my parents and boyfriend packed me into the car and took me to the emergency room.

There I sat as the doctor refused to give me the medicine I needed, when I was in a state my own doctor didn’t have prescription rights in. That trip to the emergency room was the first time lupus shattered my plans.

I realized that I needed to refocus my life and that I would never be able to stay away from my doctors for longer than three months at a time – and even then, I shouldn’t stray very far from them.

I finished nursing school and picked up a respectable job in an ICU as a nurse. I moved in with my boyfriend and enjoyed learning to live with a a man I loved. I loved picking up overtime and earning more money. However, lupus struck again. I missed a week of work…and then another…and another. Luckily, my bosses were amazing and worked with me. But I learned that I cannot pick up overtime every week like other nurses my age. There went my plan to quickly pay off my student loans.

I think you all get the gist of it. Life is going well. You’re looking forward to the future and then your illness decided to give you a big ol’ “eff you.” That is the unpredictability I can’t stand. The unpredictability I’m still learning how to accept with a grace that doesn’t send me spiraling into a failure-fueled depression. I’m not sure how I will ever accept it. I’ve been fighting this illness for 10 years now, and its still the number one reason I struggle with it. I have to cancel trips to visit family, girls’ nights outs, and even work. Not only do I have to cancel those plans, I also have to cancel life plans as well. My husband and I have recently started trying for a baby, which is something that severely limits the types of medications I can be on. However, lupus is acting up yet again. This might be another plan that lupus takes from me.

Lupus takes the short and the long-term. Lupus takes the things that give people hope. It is the worst type of unpredictability. Yet, I will never stop planning. I will always strive for whatever I can do with the body I have been given.

Photo by Brandi Redd on Unsplash

Originally published: August 28, 2018
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