It can be devastating to watch a loved one struggle with a chronic disease like inflammatory bowel disease (IBD). Even when they do everything “right,” everything their doctor says to do, their disease doesn’t always respond as expected.
But don’t give up. You are such an important part of your loved one’s plan of care for tackling IBD. Studies show that the social support you provide can actually help your loved one’s disease go into remission, in combination with medical and self-care tactics.
So, what can you do? Here are some ideas:
Be a good listener.
Yes, that means even when it feels like the same thing for the hundredth time. But your loved one needs you to listen as they try to navigate the medical system, make decisions regarding changes in care, and jump the hurdles this disease throws in their way.
Get comfortable talking about poop.
It’s a natural process that all humans do, yet it’s something that is considered somewhat taboo in our society. Well, your loved one’s disease affects their GI system and often results in diarrhea several times a day, sometimes accompanied by blood, fatigue, and abdominal pain. When your loved one tells you what symptoms they’re experiencing, put social taboos aside. Chances are, your loved one is already embarrassed about their symptoms.
Respect your loved one’s need for their own bathroom.
As much as possible, someone with IBD needs access to their own bathroom all the time. When they’re having a flare, diarrhea is often very urgent and being asked to wait to go to the bathroom can cause accidents and additional embarrassment. Even when their symptoms are relatively controlled, bowel movements are often much more urgent for people with IBD than people without it.
When someone doesn’t feel well, it can be easy to isolate themselves. That’s often the worst thing to do, as it becomes that much harder to access help. If you haven’t heard from your loved one as much as usual, a quick text, email, or call lets them know you’re concerned about how they’re feeling. This also opens the door for more communication in the future.
Don’t pressure your loved one to go to social gatherings or activities if they say they aren’t up to it.
It can be so difficult for IBD patients to understand when they need to say no to invitations. They can feel left out because they have to be much more cognizant of self-care than people without autoimmune disorders. A night on the town may result in a few hours of missed sleep for most people but not much worse. For someone with IBD, the missed sleep can lead to a flare.
Cherish the times your loved one feels well and you’re able to enjoy activities together.
The flip side of not pressuring your loved one to go out is making the times they feel well enough to do so a special time. Have a good time together, take pictures, laugh, make memories. Help your loved one not think about their disease for a few hours.
Offer to go with them to doctor’s appointments or colonoscopies.
Sometimes having someone come along to these parts of care help everyone to feel more comfortable with the disease. Practically speaking, most patients will be sedated for colonoscopies and unable to drive themselves home anyway. Grogginess as sedating medications wear off can make many people feel vulnerable. Be your loved one’s safe person and safe ride home.
Lean into the bond the illness makes between you and your loved one.
Often, the strongest bonds are created between people who have worked through a particularly rough patch in life together. As terrible as this illness is, let the bond be lasting.
Consider formal support groups.
Organizations such as the Crohn’s and Colitis Foundation host support groups across the entire United States (and some other countries, too!). You and your loved one are not alone.
From us here at GIH, thank you to all the people who are a social support to our IBD patients. We couldn’t do it without you.