The Other Side of Crohn’s: Caregiving

By Anand Omprakash

Originally published by the Crohn’s & Colitis Foundation on December 3rd, 2019: https://www.crohnscolitisfoundation.org/anands-story

“Love is that condition in which the happiness of another person is essential to your own.” – Robert A Heinlein

For anyone who has been in a loving relationship – romantic, familial, or other – I hope this quote resonates. Love truly is the condition in which another’s happiness is crucial to your own. In fact, that is the whole point of a loving relationship, is it not?  

This aspect of love very much applies to relationships in which we are not just partners, but also caregivers. A caregiver is one who takes on responsibility for taking care of their partner in a way that is increased relative to what their role would be in a typical loved one. This increased responsibility is often because the other party in the relationship has a chronic illness or something for which they need additional support.

I, myself, am a caregiver. My wife, Tina, has Crohn’s disease, and was diagnosed in 2006 after we were already dating. People thought it was courageous that I was staying with her in spite of her condition. But I thought it was foolish to let go of somebody who was so compatible to me. She and I got along in ways that I never expected to get along with anybody. So if she was going to be sick along the way, why should I have let that stop me when everything else was working? People spend so much time looking for the right partner. Why not treat health as just one of the many considerations in a relationship? If everything else fits, why throw it all away for this one thing?

While we have always been happy together, the challenges of being Tina’s caregiver were only beginning when we first met. Her journey with Crohn’s has been incredibly brave over the years, marked by numerous surgeries and grueling procedures. For me, it has been excruciatingly painful at times. It’s difficult to see a loved one in pain and distress and not be able to do anything about it. It’s also unbelievably difficult to face the facts – will my wife make it or not? Tina has had several near-death experiences, and every time it has happened, the thought of becoming a widower has plagued me because I don’t know how I’d live without her. 

It wasn’t just her near-death experiences that made being a caregiver difficult, however. In 2015, we had to buckle down on cash to make ends meet for her to have surgery at Mayo Clinic or for her to meet her medication and office visit co-pays. In my 20’s and early 30’s, instead of attending weddings and jet-setting around the world, I spent the bulk of my vacations in the hospital as Tina’s caregiver. Numerous holidays were spent in the hospital instead of at family gatherings, including Christmas in 2011 and 2014 and Thanksgiving in 2013. It was painful to watch her suffer during these periods of time but I would never have spent my time any other way.

There have also been positives throughout my journey as Tina’s caregiver. Since 2015, when she had many major corrective surgeries and went on a biologic that saved her life, we have generally lived together healthily with ups and downs. Now, when living with IBD, there are considerations in everything, and we have to be careful about things like what we eat and where we travel. That being said, we can still enjoy vacations and good food when we are careful about these considerations. In fact, we’ve managed to travel to Europe several times since then and have seen some of the most beautiful sites in the world, such as the Sistine Chapel in Vatican City and the Louvre in Paris.

Ultimately, being a caregiver comes down to trying to make the most of the time we have with our loved one. Whether it’s enjoying the good times or curling up with my wife in a hospital bed when times are not so easy, being a caregiver means being the rock that the other person can depend on. I’m grateful for the opportunity to be Tina’s caregiver. In spite of everything she’s gone through, she has always smiled and cheered up the room for anyone who would visit her.  

So, to all the men and women out there who are daunted by illness, I encourage you to get to know a person whose health may not be perfect. No, it may not be the easiest life, but you may never know the compassion that humanity holds until you meet someone with a chronic illness.

Thank you as always for your readership! Please feel free to leave any comments and feedback. I love hearing from you all!

~~LOVE, LIGHT & PEACE ALWAYS~~