When we think of a care team, who comes to mind? Doctors, therapists, phlebotomists, gastroenterologists, and other medical professionals probably do — but what about those who pay more witness to our symptoms, bad days, and flare-ups? Doctors help with symptom management, procedures, and medication discussions, but our partners are there for emotional support and often carry a load that’s just as heavy as ours.
This isn’t to downplay the experience of those of us who live with ulcerative colitis (UC); however, it is a heavy thing to see someone you care about in pain. Our partners are often the ones running to the pharmacy, cleaning up the mess in the bathroom, feeding us, comforting us, driving to and from colonoscopies, managing appointments, and doing legwork to help us find — and stay in — remission, when we aren’t able to do it ourselves.
However, being the partner of someone living with UC doesn’t come with a handbook. When you’re newly diagnosed, it’s scary for everyone in that inner circle. We have to learn a new way to live in our body, and our partners have to learn how to navigate something they know nothing about. We’re in it together.
Whether you’re the partner or person living with UC, here are 10 ways to offer support when everything feels really big, new, and foreign:
- Just be there. Many partners want to do more than just “be there.” They want to fix or do something actionable — but as a person who has lived with UC for more than 20 years, I promise that just being there communicates a huge amount of love.
- Do things without asking. Instead of asking how to support, just do the thing you think may be supportive. Chances are that you’re right.
- Go to the store. One of the hardest things to do during a flare-up is grocery shopping. Make a list, and do the shopping for them.
- Educate yourself. Knowledge is power, and that’s as true for the person living with UC as the people supporting them. Take time to learn about the condition to arm yourself with helpful information.
- Ask, “How are you today?” — there’s power in asking about today’s mood and feeling, even when it feels too overwhelming to answer that question. When you ask specifically about that day, it’s pointed and accessible to respond to.
- Learn where the bathrooms are. Going out, even for 10 minutes, can be extremely anxiety-inducing, especially during a flare. That anxiety is contagious when your partner is an empathetic person. Rather than letting it take over the car ride, look ahead of time where the bathrooms are along your route.
- Update others. People want to check in, but someone living with UC may not have the energy to respond. Take that load from them when you can, and send updates to other family and friends.
- Find your own support system. Supporting a loved one is hard emotional work and it’s not selfish to take a break when you need to. Check in with your own people on a regular basis.
- Tell them you love them. Through sickness and in health, you have your partner’s back. Chronic illness can deeply impact a person’s self-worth, so hearing this simple phrase can speak volumes.
- Don’t be afraid to enjoy life. It is easy and understandable to get stuck in negative feelings. That’s why finding good moments daily is important; it means you’re establishing what works for you and your partner when it comes to balance and drawing a line between the bright and hard sides. Finding ways to smile together brings you closer and reveals to both of you that you’re there for each other.
Everyone living with UC — or any chronic illness — deserves the support of a partner, including you.