I am very young. Still in college. It’ll be six months since the first day I was able to legally buy alcohol in a couple of days. And yet, I relate to this post very profoundly on account of the fact that my boyfriend, Anders, of two years- with whom I am presently going through a rough patch on account of distance, I’m sad to say- was diagnosed with a rare illness called Behcet’s Disease last year, after a six month period in which he was too sick to work, too sick to do much of anything. He and I found ourselves living together on account of poor planning and an inability to find roommates quickly. We had never intended to move in together for romantic reasons, it just… happened, because it was financially the best choice at the time, and it was difficult because neither of us was ready for it. But that’s beside the point. In January of last year he began experiencing bizarre symptoms, all while under my watch, and over the six month period prior to his diagnosis they worsened and became increasingly distressing. He had weekly fevers (which usually peaked at around 103) that caused him to overheat at night, he’d have night sweats so terrible that he’d saturate his sheets and leave pools on the mattress. He’d get up to open the windows and turn on the air conditioner, too, and he’d ask me desperately for water, in a voice so fragile and sad that it broke my heart. He’d get chills from the fevers, too, and on 100 degree nights in our apartment without air conditioning would beg me to get under six layers of blankets with him to keep him warm. I had to oblige, because what else can you do for someone you love so much?

I drove him to his doctor’s appointments in his car when he became unable to walk on account of severe inflammation in his hip. I scratched the bumps on his skin which were so characteristic of his rare illness, and I cooked him special food when he had open sores in his mouth so severe he could barely speak. I remember him screaming in his sleep because the inflammation in his sternum was so excruciating, I remember him saying something similarly morbid to what your husband says, which was “Rachel, I’m dying.” I’d sit, dull-eyed at a nearby coffee shop, chain-smoking with frizzy hair and big sunglasses on to hide my eyes swollen from crying and lack of sleep when I needed a moment to myself. I was a wreck. Doctors said perhaps he had leukemia, or some sort of incredible hypochondria brought on by the stress of losing his job. I said the latter of the two was preposterous, and the former too horrifying to consider.

When he had been in bed with a headache so severe he could barely open his eyes for nearly a month, and they laughed at him in the emergency room for coming in for “just a headache,” I snapped. They told him he had a sinus infection, because his sinuses were inflamed. I pulled the nurse into the hall, and screamed with frustration that he did NOT have a FUCKING SINUS INFECTION. She at last agreed to do one more scan of his head, and in his jugular vein they found a gigantic blood clot- also a symptom of Behcet’s, and one that could’ve easily killed him within the month.

It was maddening. It was tragic, seeing a man several years my senior who had been in perfect health when I met him crying out in his sleep and saying he wished he were dead. Neither one of us has any immediate family here in Utah, (where, at the time we both lived and I still do,) as we are both from the east coast, so all we had was each other. And incredibly, it brought both of us through. It would be heartless to suggest that my psychological suffering was even comparable to what he was going through, of course, but I know what it’s like to be on your side of a situation like that. It’s heartbreaking, but I do believe that love is the best medicine there is.

I have never shared this story in a public forum before. I hope it isn’t weird. I just wanted you to know that your story really moved me, and that you’re not alone in your experience of gutwrenching empathy for a chronically-ill loved one. Anders finally got a diagnosis after the blood clot incident, and is now on (some really scary) medicines (that he also swears will kill him,) but he’s back at work and his disease is under control.

I sincerely hope that your husband stays well, and that you continue to be a force of such positivity in his life. It’s all you can do, and it’s so incredibly difficult, but it’s worth it. Good luck, truly, and thank you for sharing.