It was a cold night in late November 2019, the wind was harsh enough to prove my favorite jacket insufficient. I just got done eating dinner at a Spanish restaurant with my co-worker who was mentoring me through a stressful situation at work. I walked to a Blue Line stop near O’hare, to go back to my apartment for the night to try and keep working on all the tasks I had to do. If I didn’t do them I had no clue what would become of me. I was alone on the platform and the wait for the train felt like the longest part of this day. I pulled my frozen hands out of my pockets and looked down at them and they were completely numb and still under the bright lamps overhead. A strikingly white line divided the fingertips from their bases, the paleness was the complete opposite of the pitch black city. In that moment, I had no clue if it was frostbite or something else. The heated carriage came barreling down the track to take me home, finally. I bathed my hands in hot water the instant I walked through the door. This was the first sighting of a visible symptom. Google brought me a diagnosis of Reynaud’s. A frequent cohabitator of lupus.

Two months later after everything had fallen apart and my sixteen hour work weeks meant nothing, I was attending my nephew’s first birthday party. It was at the church in my hometown that I grew up in. I was barely able to stand and my skin on my feet and legs were purple and swollen. My mom insisted I go to the hospital. They took some tests and let me go. A month later I saw the first rheumatologist in Chicago. After the blood tests came back I was told it was Lupus. It didn’t register. I had to ask my mom if that’s what he said a few times in the days following the appointment. It took a few months before I understood that this was my life now. But it would take years for me to learn how to live with it.

The other symptoms came on and I noticed I was in constant pain in my joints and was always stiff. I had never truly felt my body like this before. I stopped eating more than some granola. I used to go to the family owned Mexican corner store for most of my food needs daily, but even that distance in the cold felt impossible. They could tell something was wrong with me and took a copy of my resume to give to one of their other customers in the neighborhood who worked in tech. The gesture was appreciated. I desperately searched for another job because I didn’t want to give up on Chicago. My friends were here. I frequently visited Ian in those days. He is my closest friend from college who temporarily ended up in a wheelchair around the same time. I tried to keep myself busy. I went to my Aikido class at the end of my street even though it was cold out. I hung out in the bar across the street because it was easy. Bernie Sanders was speaking at Grant Park. I made it to the front of the swelling crowd and let tears flow down my face when he spoke. At least there was some hope. And then the pandemic hit.

I was more isolated than I had ever been. It’s hard to explain what it feels like when nothing ever feels quite right and you’ll never get back to feeling how you did before. Systemic Lupus Erythematosus is a rare disease, 3 million people out of 8 billion. Its even rarer in men, only 1 in 10, coming out to about 300,000. I was in my early twenties and I suddenly lost my false sense of immortality that young men have. Now I could hardly manage the strength to lift a blanket over myself. Fatigue was the new normal and it became hard to think clearly. I never slept this much before. I used to stay up late working, playing games or researching a topic that interested me. Every hour spent asleep to me was time not spent doing those things. Is this my body’s way of catching up for all those lost resting hours? This disease manifests itself differently in everyone making it a semi-unique experience tailored perfectly to you. How could anyone understand it? I look normal. The drugs I was given weren’t doing anything. It was hard to see beyond one day into the future during this darkest time. Milwaukee was where I went to get a second opinion, my time in Chicago had to come to an end.

My new rheumatologist immediately made changes and I got a little better. Every three months I was in Milwaukee going through the routine of saying all pains I felt and getting my blood checked. We went down the list to pick the next medication we’d be attempting this period. This experimentation lasted over a year, but I got to a level where I was fairly okay on some days.

It’s a tricky thing because you can be feeling good for a little while during a burst of energy and trick yourself into thinking that there is nothing really wrong with you and then it all comes hurtling back to incapacitate you for a week. It was a lot of trial and error. Learning what can trigger a flare through trial and error, because the only sure way to find out is to try. Going swimming for an hour at midday was how I learned I had sun sensitivity. Afterwards I was so stiff that I was just lying in bed for a week, so now I make sure to get the highest SPF I can find and swim as the sun is getting to the end of its shift. There are certain foods to avoid, mostly anything that can cause inflammation. Eventually the medications became locked in and my visits to the doctor were less frequent. But is still work to be done and lessons to be learned. I don’t want anyone to feel sorry for me, but I would like understanding when I reach my limits and for everyone to just be kinder to strangers and give them grace because you don’t know what is swelling inside them. It took me a long time to get comfortable talking about it and not feeling like I was broken.

Getting out of the house is an important piece of the puzzle of feeling better. Forcing yourself through the fatigue and pain is sometimes necessary. I signed up to volunteer at the animal shelter near my house for four hours a week feeding cats and cleaning their cages. This has been an immense boon to my well being. Exercise is important. Something I had told to me throughout my early life, but I mostly disregarded. Simple things like going on a walk, it doesn’t need to be novel. I got into woodworking as a way to create something with my hands as a therapeutic channel of creativity. It feels good to make gifts for people you care about.

Friends and family are truly important, something you realize when you’re no longer invincible. My parents have helped to support me through the process and done their best to understand. It’s been hard at times, but I wouldn’t have made it without them. My cousins had been going through a frightening ordeal at the same time as me. They found out their side of the family has a rare genetic disease HHT and it manifests more severely in some of them than in others. I feel deeply for them even if I’m bad at expressing it sometimes. Health is uncertain and anyone can become disabled suddenly and its not a question if, but when. We all need to care for each other.

One of my favorite stories I’ve learned of is from prehistory. It is told through the archaeological find of the remains of a neanderthal, one of our human ancestors, named Shanidar 1. He was badly injured to the point of disability yet he survived long past the moment of those injuries because the people around him loved and cared for him when he couldn’t do it himself. I find great comfort in this.

Visiting friends and always having the next gathering to look forward to is a big part of what keeps me going. I’ve been lucky to find a lot of amazing people who I feel comfortable around. My friends held a birthday party for me and I fell asleep on the couch while they partied in my honor. I’m still making new friends all the time it seems. Though it has only been a small handful, I have been fortunate to meet a few other immunocompromised people who have inspired me to try my best at my endeavors. I’ve met a lot of people who tell me they know someone with lupus, but its hard to come into contact with others when we’re all in bed. We are all connected through shared humanity and that’s something that I have felt on this journey.