Every time I go for an appointment with my renal doctor, I’m reminded that I’m an anomaly. Before seeing my specialist, I jump on the scales in the waiting room, the procedure for all patients. But as I unlace my shoes and step up to be weighed, the seniors in the room all wear the same expression of bewilderment and disbelief that someone so young could have such serious kidney problems.
Unfortunately, this isn’t an uncommon experience for me. Too often, I’m reminded that I shouldn’t have the problems I do at my age. In some ways, I feel like I’m 21 on the outside and 60+ internally.
I don’t have the issues of your average 20-something, and I’m reminded of that time and time again. Doctors, nurses and medical professionals never fail to mention that I’m at least 30 years younger than their usual patients, and it’s always accompanied by a look of pity that I can’t bear.
My priorities often aren’t the same as my friends’. Sure, I still worry about university assignments and exams while trying to maintain a healthy work-life balance, but before I can even think about any of that, I’m thinking about my kidneys and my health.
Medication, exercise and doctor’s appointments are at the very top of my priority list. Everything else is secondary, as it has to be. I don’t have the option not to think about my health, as being lax would have serious repercussions.
A lot of people don’t understand the full extent of my condition. They don’t understand how much medication it takes to stop my body from destroying itself, how many nights I stay awake unable to achieve the basic human function of sleep, or how many mornings I’m forced to oversleep only to wake up and wish I hadn’t.
I’ve become a young adult with a mental maturity far beyond my years. Being diagnosed as chronically ill forced me to realize that I’m nowhere close to invincible and that nothing should ever be taken for granted — especially health or time.
I’ve thought about organ donation or donating my body to science, and while they’re not typically the kinds of subjects you’d be thinking about at my age, even though I probably shouldn’t be, I’ve become incredibly comfortable with it all.
In my early 20s, I’ve faced my mortality and had to acknowledge death as a very real part of life. Statistically, if you’re diagnosed with lupus at the age of 20, as I was, there’s a one–in–10 chance you won’t see your 40th birthday. And maybe one in 10 doesn’t sound too bad, but that all changes when there’s every chance you could be that one.
I’ve had to grow up much faster than I should have and that leaves me with an anger I can’t resolve. There are years I won’t get back and moments I won’t ever experience because of lupus. At 21, I’m so much older than I ever thought I would be, and while it’s not always a bad thing, there’s always a part of me that would do anything to have the feeling of being carefree that I always assume was meant to accompany my youth.
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.