How to Be a Supportive Partner to Someone with IBD

My husband and I have been married for 5 years, been together for 9, and we met just 3 weeks after my partial colectomy for my Crohn's disease.

It may be cliché, but I was one of those people who knew that I wanted to marry him from the second we met, but of course, the thought crossed my mind. "After he finds out about my Crohn's, would he want to marry me?"

Living with someone with Crohn's or UC has challenges

Being a partner to and IBD patient is not easy. I often think of how many times my husband had to re-arrange his work schedule to take me and pick me up from my colonoscopies and how certain restaurants are off limits because they don't offer anything that I can eat due to my gluten-free diet. It's also no secret that our medical bills are higher because of my biologic infusions, and sometimes traveling is hindered due to my upset stomach. 

However, despite these challenges, he chose to be with me, marry me, and have 3 children with me. He is a great partner and is supportive of all things that come with having a spouse who has Crohn's disease.

You may be wondering what makes him so great and how is he able to offer me emotional support when I need it most?  Here are some ways a partner can truly be supportive to us Crohn's and ulcerative colitis patients, even when we may be at our worst (which is when we need you most!).

My advice for the partners of IBD patients

Avoid asking "yes or no" questions

We tend to feel guilty asking for favors, regardless of how small they may be. So, when asking to help, avoid "yes or no" questions. 

For example, if my husband says "Do you want me to pick up your prescriptions?" I will 10/10 times reply with a "no," even if I physically cannot get off of the couch. He has caught on over the years, and now says "I am going to get your prescriptions. What time will they be ready?" 

I know that his mind is made up, and he is getting my prescriptions whether I want him to or not. By telling him the time, at least I am saving him from waiting around the pharmacy until they are ready.

How better to phrase questions

Some other suggestions of how to ask questions so that you can be most helpful:

Instead of: "Do you want me to make you something to eat?" Try: "I'm going to make you something to eat. Would you like it now or later?"

Instead of: "Can I get you anything?" Try:"I see that you are low on X. Let me get you more."

Instead of: "Do you want me to go with you to your doctor's appointment?" Try: "I would like to go to your appointment with you this afternoon. What time should I be ready to go?"

Be patient

There are some days that we just can't get it together. We may be in the bathroom for longer than anticipated or maybe nothing we try on fits over our bloated stomach. Regardless of how slow we are moving, or how late we are going to be getting to our destination, please be patient.

And, on a larger scale, please be patient while we navigate this journey with a chronic illness, especially if we are newly diagnosed or trying a new medication. 

It takes time to get to know our bodies and limitations, as well as what foods work for our bodies. Maybe the first few months after the diagnosis are spent trying different diets that relieve symptoms or avoiding social events until we know how our bodies handle stress and uncertainty. Just be patient with us and offer support, even if that is just saying, "It's ok, we don't have to go," to the next dinner event with friends.

Avoid offering an abundance of unsolicited advice

This may be the most important one of them all. Everyone knows someone who knows someone with IBD, and all of those people know someone who tried something that worked for them. And then they assume that it is the same for all patients. It's not. 

Please do not say, "Maybe you should try X. It worked for our neighbor and she's totally off her meds!" And also avoid comments like, "Maybe you shouldn't have had the Mexican food last night which is causing your flare." Honestly, that may be true, and maybe what worked for your neighbor will also work for your partner, but unless prompted, please try to avoid offering unsolicited advice. 

If we ask you what you think could have caused our stomach ache or if we are complaining a lot about our problems and you want to make some suggestions, that is totally fine, and actually welcome. But, if you keep making suggestions and offering advice based on anecdotal evidence, we will eventually get angry and frustrated.

Know that it is impossible to convey how much we appreciate you

Despite the moodiness, crankiness, and complaining that we may do, just know that there are no words that we can say, and no actions we can take that can possibly show you how grateful we are to have you as our partner. Anyone else could have walked away, but you stepped up to the plate and took us in sickness and in health. 

We cannot thank you enough for rearranging your schedule, making special accommodations, and modifying certain parts of your life just to make us happy and comfortable. Thank you for your selflessness and generosity. Thank you for putting up with us and loving us when we are at our absolute worst. 

We know that it cannot be easy signing yourself up for an uncertain future while your loved one suffers from a chronic illness, so for all that you do everyday, we thank you immensely and love you eternally.