As the partner of someone who has a long-term condition like Crohn’s, you’ll see their ups and downs with the disease. You want to be there for them, but also respect their decisions about how they handle it.
The physical symptoms they may get include bouts of cramping, mouth sores, fatigue, fever, and diarrhea. It can also trigger emotions like fear, embarrassment, or feeling like the condition is a burden for you, too.
Of course, Crohn's isn't contagious. You can’t catch it from your partner. But it can affect you and your relationship. Whether your partner is in an active phase of Crohn's or in remission, information, communication, and a lot of patience will keep your relationship healthy.
Ask, don't assume. Crohn's is not a one-size-fits-all disease. What works for one person or couple may not work for others. That's why open and honest communication is so important.
Ask your partner how they want you to be involved in the process. Be specific. For example, Do you want me to go with you to your appointments? If so, do you want me to take the lead, or listen and take notes?
Crohn's can be tough to understand if you don't have it, and you may have a lot of questions. When you want to know something, ask your partner if they're open to answering a question. Say things like:
- Do you feel comfortable speaking up if I ask too many questions?
- What do you need?
- If you need something but don't know what, please tell me that.
- I will make myself as available as possible, but I can't read your mind. If you need space, tell me.
- Name some things you absolutely don't want me to do.
The timing of these conversations is just as important as the talks themselves. To get the most out of them, wait for a time when you both feel open and your partner isn't in pain.
What to expect. It may take a long time -- and lots of trial, error, and doctor's appointments -- before your partner understands how Crohn's affects their body. Expect them to be sick of being sick; to feel frustrated with being poked and prodded at medical appointments. If you're in a safe place, expect to sometimes bear the brunt of that frustration.
When making plans, keep flexibility in mind. During a flare, your partner may need you to drive faster toward the nearest bathroom and then spend a lot of time in it. They may ask you to listen while they vent without trying to fix it. Things will change from flare to flare, so a weekly or monthly Crohn's check-in will keep communication open and help you stay on the same page.
Is intimacy in the cards? It may be no problem when your partner’s Crohn’s is under control. But it's hard to feel sexy when you're concerned about bowel control. If someone with Crohn’s is dealing with pain, fatigue, side effects of medication, or a negative body image, that can kill the mood for your partner.
Still, physical and emotional intimacy are healthy, fun, and key ways to connect with each other. And when your partner's in an active phase of the disease, they may need that connection even more. So get creative. And keep communicating.
Remind your loved one often that they're attractive to you. Ask what they'd like to do so you can feel close to each other. If you have suggestions, make them, but keep them light and low-pressure.
No eggshells are necessary. Remember, you don't have Crohn's, your partner does. Don't lose yourself in this disease. Crohn's is one part of your relationship, but not the only or most important part. You need to live your life fully, too, even if your partner feels resentment.
Being sensitive is important, but it's OK to speak up and have your own needs. If your partner can't meet those needs, take responsibility for them. Self-care is a big part of that, as is doing things even when your partner won't or can't. Go to that party. Book a weekend trip. Crohn's likely saddles you with extra responsibility, so if you have the opportunity to have fun, take it.
The gift of the outsider. Being in this with your partner is a gift. When you’re going through a hard stage with Crohn’s, it can be hard to imagine you'll ever feel better.
From the outside, you can see that it will get better -- and that both of you will learn something new with every phase of the disease cycle. If you feel optimistic and confident that Crohn's won't always control your partner's life, share that. Say, I'm here with you in this. It's going to be OK because you don’t have to do it alone.