Tips for Talking With Loved Ones About UC
Last updated: November 2022
When I was first experienced ulcerative colitis symptoms, I hid them from my family. On a visit home my parents figured out that something was wrong because I kept running to the bathroom.
When they confronted me about it, I broke down crying both because I was scared of their reaction and because I was grateful to finally tell them something was wrong.
Over the years, I've had to talk about inflammatory bowel disease with friends, partners, and other family members. I've tried to make the process feel less painful for myself and for them so that I don't run into the same stressful situation as the first time I admitted the truth to my parents. Here are some of my personal do's.
Deciding what I want to share with family about IBD
My relationships with loved ones can differ. I'm more willing to talk about my health with my partner than I am a distant family member I don't know well or feel supported by.
So I allow myself to pick and choose how much I want to share with each person because each relationship is unique in its own way. It helps me to believe that we don't owe other people information about our health unless it is clearly going to affect their lives in some concrete way.
Explaining my symptoms and their effect on my life
When I first talked to my partner about having ulcerative colitis, I had a hard time explaining that I see blood in my stool and that I have diarrhea. I wanted him to still see me as attractive and desirable, so I glossed over the realities.
However, it created a little bit of a rift since he didn't understand my limits and need to know where bathrooms are at all times. Once I explained more about my symptoms, he was able to be much more supportive of me.
Explaining medical terms and medications
It can be easy to throw around names of medications or procedures when they are familiar to me, but they can be overwhelming to others. When I talk to my family members, I take a second to explain what I mean by a term or what a medication does so that I know we’re all understanding.
Asking my loved ones about their questions and emotions
It can be useful to take a moment to see if my loved ones have any questions about the illness and what it might mean for our relationship. I also ask them what they are struggling with or what they need to be in a better place.
I often reassure my partner that it is okay to feel sad about seeing me sick and encourage him to talk to others about those feelings too.
Creating boundaries about the assumptions people make about me
For all that my loved ones want to help, sometimes they end up saying things that can be hurtful. It really bothers me when people assume those with chronic conditions probably don’t take care of themselves and are consuming substances and foods that are bad for them.
I don't talk to my family about what I eat frequently, and I remind them that having a sweet here or there doesn't mean I deserve to be sick. I simply don’t continue the conversations past that because I know it could impact my mental health.
Over the years I’ve become more adept at talking to my loved ones about my illness — and having a stronger community around me often helps me feel better.
I encourage everyone with IBD to consider the ways in which they can improve their communication and, connected to that, their relationships.
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