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The Hardest Part About Living With Lupus in College


I usually don’t gravitate towards writing that “bares the soul” so to speak. But, the question “What is living with lupus in college like?” has been turning over in my head recently. Think about it like this: every physical action you take has a consequence that is saved in your body… like a physical action bank. For most college students, they can do what they like: stay up late, get up early, run 70 miles a week, go from an event to hangout to homework, surf, travel, you name it — and their return on high physical investment doesn’t hurt them. Sure, they may have accumulated some sleep debt. They might catch a cold before finals. It won’t be that bad.

Not so if you have lupus.

The hardest part about living with lupus in college is that you will want to do all the things. You will want to push yourself like your friends and be silly and crazy and adventurous. You will want to and sometimes you can and that is wonderful. Other times it will take a lot longer before you realize your accumulated physical investment is landing you in the red and you owe hours in sleep debt. It doesn’t feel great. It feels like fatigue even after you sleep eight hours. It feels like lower back pain that’s not bad enough to be immobilizing, but still hurts enough to be your every third thought. It feels like feeling bad for just sitting and resting because you had tried to convince yourself you could operate at the same physical level as your peers.

And… you just can’t.

I found all this out the hard way. You’d think I would know after living with this condition for 10 years. We are embodied creatures, so a month after physically pushing myself (after an equally demanding summer) I was flaring up (chronic autoimmune code for small symptoms getting bigger). On a day I was telling myself to rest, I hugged my body and whispered: I am so sorry. I am so, so sorry I have not listened to you. I thought I could do it all. But, I can’t. And that’s OK.

Then, I slept.

This blog was originally published on Medium.

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