Married to Crohn’s Disease

Guest Post

-Jerry Garcia

Marriage and Crohn’s Disease

A lot of people ask me what it’s like to be married to someone with Crohn’s disease. Well, I’ve never been married to anyone without Crohn’s disease, so I assume it’s a lot like a normal marriage. My husband, Adam, and I have been married for less than a year. We dated for a while before taking the official plunge, though we pretty much always knew we would end up at the end of the aisle together.

He was diagnosed with Crohn’s disease over 20 years ago. Because he was diagnosed so long before we even met, some aspects of his life with Crohn’s disease were already figured out. He already knew what kinds of foods would hurt when he’s in flare. He already knew what his body felt like when a particular medicine stopped working. He already knew his pain scale, and how much he could handle before needing hospital intervention.

I, however, didn’t know anything about Crohn’s disease, other than what he had told me. We met in 2011 while both working at an organic grocery store. We fell in love in the produce aisle…or something like that. Fast forward a few years and we’ve moved out of our separate homes, into a new place, and opened our own coffee shop. We’ve adopted a puppy, gotten married, and combined our two lives into one.

Also in that time, Adam’s had two major surgeries, countless hospitalizations, and more colonoscopies than most “normal” people may have in a lifetime. The last year in itself has been the most insane (both directions) year I could have ever imagined. But we are still standing.

In the time that we have known each other, we have both learned so much about how to make this dynamic work. I have learned to speak up for what I need, because I know taking care of myself is key to taking care of him, which is key to taking care of us. If I said the weight of Crohn’s disease has never worn on me, I would be lying, and so would any caretaking spouse.

It has never been easy to see the person I love more than anything in pain that I can do nothing about.

I hope it never gets easy to see him hurting. I never want to be OK with that. That being said, there are things that have made our journey smoother, things that have made those awful hospital trips a little less stressful on both of us.

First, I am going to talk a little bit about my dealings with the medical professionals constantly surrounding Adam, whether that is in regular doctor’s appointments, or in the hospital. Adam asks that I attend his regular GI appointments, which has been so amazingly helpful to me. It allows me to ask his doctors questions and help Adam remember any recent symptoms, reactions, or changes to his typical routine. It also allows me to develop a relationship with his doctors, so when we are in the hospital and they come to visit, I have a familiar face to ease my worried soul.

It sounds silly, but knowing the doctor that comes through the door (and knowing they are good) can have such a calming effect. Honestly, I know that hospital doctors are doing the best they can, but when you’ve had the same GI since diagnosis, you know that no one else knows the history the way they do. I also keep a somewhat ridiculous binder of medical paperwork (and my own notes) from appointments and hospital stays.

It helps us both remember when bloodwork has been done, and what doctors have prescribed which medicines, etc. The binder also is useful to me when I am doing some independent research. Keeping on top of the technical stuff helps me feel less overwhelmed when things are going wrong or crazy, but it doesn’t completely ease the stress.

Thankfully, I am constantly surrounded by the world’s best support system. Between our friends and family, I am always blown away with how helpful everyone is. It really is the smallest things that make such a huge difference in our lives, especially when Adam is in the hospital. This is when I find myself needing the most help, between emotional support, and actual day to day life help. We have had friends take our puppy for the entire time Adam’s been in the hospital, or family come stay at our house with her. This allows me to spend all of my time and energy between the shop and the hospital, and know that our precious little fur ball is being taken care of, and not just fed, let out, and put back in her crate alone.

While all of our friends and family offer their ears when I’m stressed and freaking out, it has been a combination of my best friend, Anna, and Adam who are the most amazing listeners. We live about an hour away from the hospital where Adam’s GI practices. In order to receive the best care, we make the drive out there every time a hospital stay is needed. On the drives from our coffee shop to the hospital and back, I frequently call Anna with updates, venting, worries, pretty much anything. She lets me cry over stupid stuff and tell her how honestly terrifying every inch of the hospital is.

Adam is my true rock when it comes to anything. People ask if I vent to other people to avoid stressing him out, but not talking to him about what’s going on in my head stresses him out way more. He completely understands how scary it is to feel like you might really lose the person who means everything to you. When we were dating, I thought I might honestly be a widow before I was even married. It was the most miserable feeling I have ever known, and I tried to keep it to myself so he wouldn’t have to worry about how upset I was. That was such a mistake.

As a caretaker, putting your own feelings and needs on the back burner is only going to hurt your relationship in the long run. It’s hard to feel like your aches and pains and worries matter when you know that your loved one is in more pain than you can even imagine, but it is so crucial to be honest with yourself and your partner.

Resentment is very unsexy. Adam has seriously been the best in this area. When I am having any kind of physical pain, he never makes me feel like it is less than his. In fact, he never ever compares the two. He is attentive and kind. He recognizes the signs that I am over-stressed or overworked, especially when it’s related to taking care of him. What helps the most is how amazingly grateful, patient, and understanding he always is. That’s what keeps the stress down for me. I am able to tell him when I’m scared and when I’m hurt, and when his disease has me feeling down and lonely and unimportant. He is able to tell me the same.

I sleep in the hospital with him when he stays overnight. It means early morning drives back to work and late-night arrivals at the hospital, but it makes us both feel so much better to be together. Although the chair in the hospital isn’t comfortable to sleep in, but because it’s next to him, it’s better sleep than I would be getting at home, apart.