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Living with Lupus is Hard

Two purple awareness ribbons that symbolize living with lupus.

I thought to myself, how did this get so bad?

In truth, I hadn’t paid attention to the slow buildup of symptoms of what would become a full-blown lupus flare-up.

I may pay for that misstep for the rest of my life.

Lupus changed my life

Lupus is one of the 80+ autoimmune diseases affecting Millennials in growing numbers. For whatever reason — environmental, hormonal, genetic — the rising number of cases in young Americans means that these diseases, including type 1 diabetes, multiple sclerosis, and rheumatoid arthritis, will have a serious impact on our generation’s future health.

A working metaphor for lupus (and most autoimmune diseases) is that it can flare like a bonfire, leading to quick and horrific consequences. But most of the time, with the help of lifestyle changes and medicine, it can be contained like simmering coals.

I was diagnosed in my sophomore year of college. I experienced minor bouts of fatigue and some foot pain that made walking and standing for long periods of time a little tough, but I could still carry on with life as usual.

Thanks to my doctors, my lupus was dormant (simmering) when I headed to Ireland.

At 24, I was living my dream, in a PhD program in Dublin, researching a topic that had been my passion for years. I traveled the green countryside on the weekends and attended plays in the evenings. For the first time in my life, I was living alone and managing my health on my own.

While I was distracted in the experience of my perfect life, the coals were heating up and a bonfire was imminent. I had taken for granted that my disease was under control, as it had been in the US.

If only I had seen my body was trying to tell me something.

Missing the signs of an imminent flare-up

I remember texting my mom one day, sending her pictures of my fingers, which had curdled into strange S-shapes, forming textbook “swan-neck deformities” that are common to rheumatoid arthritis. “This looks weird!” I said in the message.

Soon after, I grew extremely ill, unable to stomach any food. I lost 20 pounds. I could barely get out of bed. I did most of my research from my room, asking God for the energy to do the simplest things, like brush my teeth or put on socks.

Before I knew it, my rapidly declining health caused me to return home.

All life plans on hold

I was hospitalized in my hometown in Ohio for several months. At one point, I weighed 90 pounds. I am normally 140. Lupus had attacked my muscles, making me unable to stand or get up from a chair without help. It damaged my liver, made my hair fall out, and worst of all, it injured one of my heart valves.

My foreseeable future would be filled with doctor’s appointments, infusions, blood tests, and surgery on every one of my fingers.

I was inconsolably frustrated. Wasn’t I just on track to get my doctorate in English? Had my chapter of living in Europe really come to a close that fast?

It had, and I needed to accept that, and quick. My focus now is simply on recovery.

This much I know…

It’s been nearly a year since my flare-up. As I write this, I am recovering from one hand surgery and am set to undergo another one in a month’s time. For some reason, I find comfort in an image of a metronome, as I wait for what the normal rhythm of my life will be.

As a young adult with a chronic illness, I have learned to…

1. Be much more honest with myself. Because I never want to go through a flare-up as bad as this first one was, I have to consider my health first and ask myself the difficult questions: Will a 40-hour work week be too tough on your body? Could you, physically, live safely by yourself?

2. Live a “person-first,” not a “disease-first” life. I have lupus, but lupus does not have me. My life may not be as I pictured it, but it is still my life, and I am determined to use the talents God has given me to make a difference in the world.

3. Give myself permission to adjust personal goals. I am making plans for a revised future that is full of hope, and I trust that I will find a new normal and a new peace.

4. Not be so hard on myself. 
It’s not easy to be resilient. I need to take the time to heal and assess what my new life will look like — even if it will inevitably look different from the lives of my friends.

5. Be grateful for the positives in my life. I’ve learned to be thankful for what I am able to do. I find joy in the mornings when I am strong enough to make breakfast and drive to the local library. I also do freelance writing, which I can manage and thoroughly enjoy.

Living with lupus is not easy. I may never be as healthy as I would like. But I find beauty in my journey, and I am proud of my determination to keep pushing forward.

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