In May 2016, I landed in the hospital for a week. Doctors wanted to find out how I had managed to gain 26 pounds from fluid retention in just two weeks. For 12 hours, Sunday night doctors and nurses poked, prodded, and questioned me. Then their shift changed, and I was poked, prodded, and questioned by the doctors and nurses of Monday morning.
That night I felt like a specimen. Six nights, a renal biopsy, and countless blood and urine tests later, and they were 95% certain they had found the culprit: lupus.
Two weeks later, I received reports that changed my life. My nephrologist turned his computer screen to show me the results of my kidney biopsy. There it was — definitive evidence that lupus inhabits my body.
That was a critical moment in my life. I’ve reminded myself of it often in the last four years, and more frequently lately. No matter how successful treatment may be, and no matter how shocked doctors are by my progress, I still have lupus. That’s a fact supported by data and documentation filed under my name and patient ID number.
This past year, I have struggled to write columns. It’s not that I’m any less connected to writing. But as I inch closer to remission, I feel more like an imposter in my own community.
Western society has a very rigid view of health, which leaves me in limbo. Lupus is a black mark on my name that I will never be rid of. I’ll never be healthy enough to fit society’s view of what being healthy is. Yet at the same time, as my medication does its job, I no longer fit the mold of “sick,” either.
In the early days of my diagnosis, the bad days outnumbered the good ones by a factor of 10. These days, my scale of measurement is different. My days are no longer classified as good or bad, they’re measured by how many hours I need to nap. If I’m lucky, I can make it through the day with a quick, half-hour nap. On worse days, I’ll lose half the day to snoozing.
Fatigue has always been my greatest struggle. But with lifestyle changes, medical treatments, and time, it feels manageable. For a long time, the fatigue was so heavy it was like lugging around dead weight. After years of putting one foot in front of the other and taking things one day at a time, I feel lighter and freer than I ever could imagine.
But those feelings come with a cost. Every step toward remission feels like a step away from the chronically ill community. I still have the paperwork to prove my membership, but my hardship feels comparatively insignificant these days. Struggling with fatigue doesn’t feel valid when compared with other people’s daily battles with joint pain, brain fog, and migraines.
When I received my diagnosis, I was lost, and I no longer knew where I fit in the world. It’s now 2020, and in many ways I feel like I’m back where I started. Once again, I don’t know where I belong.
Have you ever felt like an imposter in the chronically ill community? Please share your thoughts in the comments below.
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, and are intended to spark discussion about issues pertaining to lupus.