An Interview With My Husband on What It's Like Caring for a Wife With Crohn's
Yesterday marked my one year wedding anniversary. In the days leading up to the special milestone, I got to thinking about how daunting it can be to have a chronic illness and wondering if you’ll ever be able to find someone who loves you, despite your health imperfections. Since I was diagnosed with Crohn’s disease at age 21 in 2005, I’ve experienced how the disease has an impact on the way relationships play out. It’s not always pretty, but it does provide extreme clarity about people’s characters.
Through social media I’ve come across many people and articles that express concern about ever being able to find a lifelong partner and worry about whether having a child is ever a possibility. I’m here to tell you it can be possible to have it all. Your disease does not always limit you in this aspect of life. So, what does one look for when it comes to finding the perfect partner who also makes the perfect caretaker?
You need someone like my husband, Bobby. Prior to meeting me, Bobby did not know what Crohn’s was. When we went on our third date, I told him during lunch. It was my way of being transparent and laying it all out there. Was I nervous? Of course. Was it a relief to get it all out in the open? Absolutely. Has he been there for me every feel-good and difficult day since? Yes.
Six months into our relationship I had a bowel obstruction that landed me in the hospital for five days. In the blink of an eye, I went from feeling fine to being rushed into the ER. Bobby quickly saw how debilitating, painful and scary Crohn’s can be. In that moment he went from being my long-distance boyfriend to my lifelong rock.
The first time Bobby experienced a hospital stay with me was the toughest for him.
“I feel bad even saying anything is hard for me when I know your insides are twisting and torturing you,” he told me at the time. “But there is no better phrase than ‘it sucks’ to describe how I feel, knowing you’re going through hell and there’s nothing I can do.”
“I felt completely helpless,” he recounts. “I remember going to my car and just sitting there thinking about everything that had happened. My mind was going in a million different directions, and I was feeling every emotion. I was tired, anxious and worried. Yet it wasn’t even one percent of how bad you were feeling. Part of me wanted to punch something out of pure frustration, while another part of me was ready to break down and just cry for a moment.”
Fast forward more than three years later.I interviewed Bobby this week to get a better feel for what it’s like to be on the other side of things – as the constant caregiver.
NH: What advice do you have for those whose significant other battles chronic illness?
BH: I don’t look at you as having a severe chronic illness. I don’t let that be the thing I think about with you. I find I almost reject the idea of you being sick until we’re dealing with a flare-up or rough patch. My advice would be to treat the other person like everyone else. Don’t make them feel like they are any different because of the health issues they face. Be by their side and think of anything and everything you can to take their mind off the current situation. Every person is different – but when you love someone, you know what takes their mind off things and what they like best.
NH: What have you learned since we met in summer 2013?
BH: At that time I just knew the word Crohn’s… I had no clue what it entailed or meant. When you first said it, I wondered if it was contagious and how it impacted your life. It’s been nearly four years and I’ve witnessed how devastating it can be. It’s hard to see the person you care about in so much pain. I always try to be supportive, but also keep our life in perspective and recognize that there are many people all over the world going through a whole lot worse. We’re both still breathing, both still living. You may be in pain, but we’ll push through. To this day, I’m fearful of emergency situations and complications that may arise.
NH: When I was wheeled away to surgery for my bowel obstruction in 2015, what crossed your mind?
BH: I felt sad and fearful. I envisioned you being nervous and scared. It sucked watching you be wheeled away because I wanted to be there with you. After surgery, I was relieved the procedure was over, but was still concerned because I know with Crohn’s you’re never entirely out of the woods since there is no cure. When you’re in the hospital, whether it’s for Crohn’s flare-ups or when you were delivering Reid, there is a certain vulnerability about you that makes me want to do all I can to take care of you…and it’s easy, because I hate seeing you like that and just want to help you get back to feeling 100 percent.
NH: How has living with and loving someone with chronic illness inspired you or changed your perspective?
BH: It’s a constant reminder that this isn’t going away…when I see you give yourself shots and how painful they are for you it’s a reminder that you go through a lot to keep everything at bay. It inspires me that despite what you go through with the disease, you have so much energy all the time and are such a ray of sunshine through it all.
NH: What advice do you have for those with chronic illness who are concerned about finding “the one?”
BH: Don’t let it limit you in anything you do. Don’t feel like you need to share it until you are ready. I wouldn’t be fearful of it being a deal-breaker. If the person is worth your time and is in it for the right reasons…and truly cares about you, it won’t matter. You are so much more than “Natalie with Crohn’s disease.” There’s no downside in sharing. There’s a good chance the person will feel closer to you for knowing that personal detail and they’ll probably be thankful you were willing to share. Try your best not to be wrapped up in worrying what people will think about having Crohn’s. Be with someone who makes you feel comfortable and at ease with what you are going through. When I knew I liked you, I wanted to be around you and taking care of you when you needed it. It was and is second nature to me. When you love someone and they are hurting…you want to be the one who’s there for them.
NH: Aww, thanks honey…any last thoughts?
BH: Remember that every moment in life is fleeting and temporary. In the good times and bad…you get through it. Try your best not to worry about things you can’t control. Stress is a trigger with Crohn’s. It’s easier said than done – but know you can’t control everything. Stay away from things like corn on the cob and coffee if you know it’s going to cause issues. I don’t look at myself as being a special person, babe. Anyone you love…you do what it’s going to take to help them. We learn together through each situation, experience and setback.
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Thinkstock photo via teksomolika.