Marrying into Chronic Illness

How We Met - Colin's Wife Tells Her Side

I first met Colin on Memorial Day. I had moved to Maryland only a few months prior and had not made any real friends yet, so I joined Meetup.com. For those not familiar with Meetup, it is similar to a dating website, but for finding new friends. My coworker convinced me to go white water rafting one weekend where I met two girls who invited me to a barbeque for the Monday of the holiday weekend. Since I had yet to meet many people, I showed up to this party with batches of homemade cookies. I arrived late so everyone had been there for several hours already and I think I was a bit too perky for most of their liking.

I don’t think Colin and I spoke one on one much that day, but this group of friends got us into the same social circle. I started to see him a lot more often. A friendship soon formed and we began hanging out, just the two of us, more frequently. They say the best relationships come out of friendships, and I agree, but wow does blurring that line make it confusing! There were times we hung out where neither one of us knew if it was a date or not (even one time where two other friends crashed our movie day). It took nearly 3 months of flirty text messages and is-this-a-date-or-are-we-just-friends kind of hangouts to finally put a label on our relationship.

Back to that movie day that got interrupted: Colin and I started a movie day in the late morning and were going strong in the early afternoon when two friends stopped by (uninvited) to join us. We were watching James Bond and came up with the great idea to go out for drinks dressed to the nines that night: suits and dresses. Since our day was going to be fading into a night, Colin told me he had to do an infusion and it was fine if I stayed. He wanted to make sure I was not afraid of needles. I am not afraid of needles or blood so I shrugged, but I was a little panicked and a million thoughts raced through my head. He didn’t look sick. What was wrong? Was he dying? Was it contagious? I didn’t want to be rude or make him uncomfortable, so I kept all of these questions to myself and tried to play it cool like this was the most normal thing in the world. Colin offered up the name of the illness: primary immune deficiency, but that was pretty much all I got that night. And I didn’t pry.

Colin finally asked me on a real date. He rented a mini cooper to sport around town and we started the eventful day at an eclectic diner in Baltimore called Paper Moon. While we were there, I asked him if we could talk about his primary immune deficiency and he said of course. I had gone home and done research on PI and I was loaded with questions. I asked what form of PI he had; if he knew whether it was on his mom’s side or his dad’s side; did anyone else in his family have it? How frequently did he do infusions? Did they hurt? How frequently did he get sick? Would he pass this onto his children? Colin calmly answered all of my questions and when I was finished he told me I was the first girl who had gone and done research before asking him questions.

By the time we got married, I had already accompanied Colin to the hospital for a biopsy on his tongue, to meet his new doctor, to the urgent care clinics for a handful of sinus infections and to the emergency room for an extremely high fever. I know that there will be more of this to come. I’m as prepared for it as I think I can be. I try to stay involved in Colin’s health as much as possible. I accompany him to the majority of his doctor’s appointments, when he flies for work I make him bring antibacterial wipes and encourage extra rest, when he delays an infusion (much to his annoyance) I keep track and remind him to do it, and I make sure I buy his favorite snacks for his infusion days. There are going to be things we will have to consider in our marriage that the average couple might not. From the somewhat simpler “can we travel to Mexico with family this winter or is the risk for Zika too high?” To the more complicated, “should we get genetic testing to find out if our future children are likely to have PI? If we have children, and they get sick, will Colin have to stay away from them? And how will the changes to health care affect us and our future?”

I know that chronic illness in a marriage is not easy, but Colin makes it easy for me most of the time. He’s stronger than most people I know who have fully functioning immune systems. He has never used his PI as an excuse. He never complains and pushes himself past the point he should most of the time.

Colin isn’t the type of patient who sits back and asks “why me?” Instead, he takes what he has and says “what can I do to give me and people like me a better quality of life?” and that, ladies and gentlemen is where Immune Competence came from, see here for the origin story. It’s why after a long day at the office, 90 minutes each way on the train, he comes home and writes blog posts. He wants to make sure everyone has access to the information and opportunities he has had in this journey. Sometimes I see him fading and I ask how many “spoons” he has left, for those of you that don’t get that reference, see “The Spoon Theory”. He’ll usually smile back at me and say “None, but I found a fork!” Thank you all for reading and for being my husband’s “forks.” He is inspired every time he hears from you and always says what a privilege it is that you trust him with your stories. I am looking forward to popping in as a guest writer occasionally so make sure to send your questions in here. See you soon! – Kristen