Just like we did with our Parenting Perspective, we sat down to chat with two IBD activists about how their marriages work in the face of IBD. This special conversational post compares two perspectives – one spouse who has Crohn’s, with that of a spouse who is a caregiver.
You may know Ryan Stevens of The Crohn’s Disease Survival Guide. Ryan is a long time patient of Crohn’s, and is working on his second attempt to swim across Lake Erie for funding and awareness.
On the other hand, we have Rebecca Kaplan, blogger at Caring for Crohn’s, who is not a patient, but has seen and cared for IBD first hand.
GBM: Tell us about yourself and your spouse. How does IBD affect your family? Were you together when the diagnosis happened, or were you/your partner already diagnosed when you started dating?
Rebecca: My husband Dan has Crohn’s Disease. We began dating two months before he was diagnosed in 2007 and have been married for 4 years.
Ryan: I have Crohn’s Disease. Diagnosed March 2nd, 2009 (my son’s birthday). Have been married since 1/23/99 so indeed my wife, Sam, and I were together when I was given the diagnosis. I was both relieved to get the diagnosis (finally knew what it was I was going through) and at the same time I was extremely confused as I had never heard of Crohn’s and therefore really had no idea what it was.
Rebecca: Dan and I started dating in December 2006 and he was diagnosed in February 2007. Keep in mind, at the time I was 20 and he was 21 (almost 22). He had been sick for awhile and had gone to a doctor who told him it was IBS. After it didn’t get better, he went back and essentially forced the doctor to do a colonoscopy. That’s when he was diagnosed. I handled it like any college student would- I didn’t really think about it. I was just like, “Oh he goes to the bathroom a lot and has to take medicine.” And that was about it. I’d say it didn’t fully sink in how sick he was/is until we started living together in 2009 prior to our wedding.
GBM: Discuss some ways you’ve tried to communicate or understand life with IBD.
Rebecca: Moving in together was definitely an eye-opener to me. I didn’t realize quite how structured he was with when he eats and what he eats. I had to learn what he was able to eat (he had a stricture and was on low-fiber, low-residue diet for two years) and how to cook for that. I also learned to sympathetic when he was in pain but not to bug him every five minutes asking “Are you okay?”
Ryan: Since Sam saw on a daily basis what I was going through she knew (perhaps better than I) just how sick I was becoming. There was never a “he’s faking it” response from her. I often see others post about how their partner doesn’t believe them and I both feel sad for them and get angry with the spouse.
Rebecca: Something you can say to explain it is what you would any invisible illness- you can’t see it on the outside but inside I am in a lot of pain that causes me to be fatigued, sick and in the bathroom a lot.
GBM: Has this understanding helped you or your spouse to become a better caregiver?
Ryan: Sam goes to every single one of my appointments and my local GI even lets her into the room when doing scopes. She got a first hand knowledge of what my insides looked like. So she really knows as much as she could without being a patient herself.
Rebecca: Absolutely. I’m the type of person who, when faced with a difficult situation, feels the need to immerse herself in learning. When my friend committed suicide in high school, I did a lot of research about teen suicide and depression and became heavily involved in the Yellow Ribbon Suicide Prevention and Awareness Program. When my mom was diagnosed with non-Hodgkin’s lymphoma, I did the same and got involved with the Leukemia and Lymphoma Society. So it was natural that when Dan was diagnosed with IBD and I became his primary caregiver, I did my research and began to get involved with CCFA. Learning about IBD (and continuing to learn now) allows me to care for him and advocate for him when making medical decisions to the best of my ability when he might have clouded judgement (depending on the situation).
GBM: As a patient, when we see our caregivers be proactive about learning/finding ways to help, it speaks volumes.
Rebecca: Absolutely. I wish others were and at the same time, wish others were less hands on. But that’s a story for another day.
GBM: What is the hardest part about being in a relationship with IBD?
Ryan: I actually relied on Sam to do just what Rebecca did/does. I was too fogged in the brain from the medications. So, that complete reliance on the other person.
Rebecca: Balancing the perspective of him being my spouse, but also being a patient. To not always coddle him or treat him like he needs my help when he’s not sick. I get on his nerves by doing that.
Ryan: Yes, like she said, finding balance when the disease can just turn on a dime. One minute I feel great. The next I look like death warmed over. This was mostly my first two years with the disease.
Rebecca: Also that plans are not set in stone. I had to learn to be more flexible- not that I would get angry at him if we had to cancel plans but more that I had to give our friends/family the caveat that we’d love to do this with you but know that if he isn’t feeling well, we may have to bail.
GBM: We’ve heard it said that when one person has IBD, both people in the relationship truly have it. What do you think about this notion?
Ryan: Very true notion. IBD comes in almost like a third partner in the marriage. The thing is the two principal partners would love to kill this annoying intruder off and move on with life but they can’t.
Rebecca: Nicely put, Ryan. I agree, it’s definitely true! I actually started dating Dan when I was in a rough place- I was having severe anxiety and my mom had just been diagnosed with cancer. I left college early that semester and went home to take care of my mom, go to chemo with her, etc. We hadn’t started dating yet but Dan texted with me through my mom’s entire first chemo session. The fact that he did that, even though we were just friends at the time, showed me how to really take on something like this. To become a rock. And because he showed that to me without having to, I felt the same way when he was diagnosed.
GBM: If you guys could tell each other, Rebecca and Ryan, something you wish the other perspective knew, what would it be?
Rebecca: Don’t keep how you’re feeling inside just for my sake. I know that you don’t want to put your disease on your spouse but I’d rather you do that than internalize, stew and inevitably make it worse.
Ryan: That their support and sometimes “poker face” is what gets me through. There were many times that I would have given up but Sam was there to say everything would be okay. She definitely didn’t coddle me. Sometimes it would be a “suck it up buttercup” kind of pep talk. That was the exact kick in the ass I needed.
GBM: Awesome. Such great perspectives to share. Next, what is the most rewarding part about being on this journey of IBD as part of a marriage? Has it made your relationship stronger?
Ryan: Definitely stronger. For sure we have learned A LOT about each other. Take Versed for example. Versed reveals the truth to both of us in that I am basically a 6 foot tall toddler. Which means I am not allowed to become an alcoholic. Because that would more readily bring to the surface this annoying two year old who rears his ugly little head every time I have a scope.
Rebecca: It’s been a bonding experience. There have been many trying times where a lot of people would have cried or gotten upset, but we’ve been able to laugh it off. It’s brought us closer- his hospital stays, etc. We still talk about some of the ridiculous things he’s done in the hospital.
Ryan: Seriously. If Sam can stand by me after all the scopes I have had. She will always be able to stand by me. (Just not behind – that would be dangerous).
GBM: How have your lives as a couple, or lifestyle in general changed because of IBD?
Ryan: Now that I am no longer chained to the couch we definitely do go out more. For about two years there it was basically nothing. I missed my cousin’s wedding, my best friend’s wedding, etc… Now we go on family trips. Last summer we went camping. I appreciate the experiences we have together that much more.
Rebecca: We try to eat on a strict schedule, meaning that we don’t typically do dinner with friends unless they want to do the early bird special (just kidding, we try to eat around 6 at the latest when we can!) I started my blog to support him, but also to support others who are caring for people with IBD.
GBM: Tell us about a time when your partner has done something super supportive for you, or you have done for them.
Rebecca: I also did something athletic, although not quite that extreme! I signed up to do Team Challenge to support him, and because I knew if I did it, in the end it would make him get up and be active and more in touch with his disease.Ryan: She didn’t tell me I was crazy when I told her I wanted to swim across Lake Erie to raise awareness for IBD. That would have hurt tremendously had she said it was a stupid idea.
Ryan: Here’s a funnier story about how Versed affects me and how I drive Sam crazy when I am coming out of it. My first ever colonoscopy – I argued with Sam the whole way home about how I was going to work. She said no. Then I told her well at least her mom would take me to do my errands, etc… I then smuggled my work phone into the bedroom and stashed it under my pillow. And then I asked for a Popsicle, which half way through it I decided I no longer wanted it. But I was still in bed, guarding my work phone, so I just layed there with my arm straight up in the air holding the half-eaten Popsicle.
Rebecca: Haha! That’s great! Dan and I have a tradition- for every procedure he has (colonoscopy/surgery), I bring him a stuffed animal. It’s been going on for 7 years and we have quite the collection now! It started with Becky Bear (very original) and most recent, his surgery was a stuffed animal version of our dog since the pup couldn’t come to the hospital. We even Skyped when he was in the hospital so he could see the dog!
GBM: Next, what advice would you offer other couples who are dealing with IBD in their relationship?
Rebecca: Be sympathetic. Learn what you can so that you can help as much as possible.
Ryan: Learn. Learn. Learn some more. Adapt. I was never a Boy Scout but I like their motto of “Be prepared.”
GBM: Yes! We are huge advocates of patients and caregivers educating themselves.
GBM: Finally, can you leave some advice for others who are still dating? So many patients have anxiety about dating with these diseases. What would you tell others to encourage getting out there and finding a healthy, successful relationship?
Rebecca: Don’t be afraid to share it- people are more understanding than you think. And if they aren’t, they are not worth your time and energy.
Ryan: Exactly. May sound corny, or the advice you always hear, but “be yourself.” The disease isn’t going anywhere (unfortunately) so you are a complete package. They either accept you that way or don’t bother wasting your time. But when you find the right person, it’s worth it.
We can’t thank our contributors enough for sharing their perspectives and advice on relationships, marriage, and IBD.
If you’re interested in contributing to a similar perspective post, please email us.