Why — and How — to Talk About Your Invisible IBD Symptoms with Those You Love

Family and friends may not know how to support you unless they have the full picture of everything you’re going through with Crohn’s or ulcerative colitis.

Inflammatory bowel disease (IBD) first interrupts our lives with a dance of flare-ups, periods of remission, and a labyrinthine path into the medical world.

Certainly, Crohn’s disease and ulcerative colitis cause abdominal pain, frequent trips to the bathroom, weight loss, and other symptoms that are fairly obvious to family and friends.

But IBD also causes a host of other symptoms outside the gut, such as fatigue, back pain, mental health issues, joint pain, vision problems, frequent infections, and more. Often, these go unnoticed unless we mention them to others.

Even those symptoms that do affect our gut may seem minor to others unless we’re curled up on the floor in agony.

The ever-changing nature of IBD symptoms also muddies the water because our support needs can change from day to day.

Thanks to this invisibility, loved ones may not understand why you’re struggling so much with this condition. While it might seem like a blessing to be able to hide the impact of a flare, sometimes it’s more helpful to verbalize our experiences and share how they affect our daily lives.

Often, we just need to initiate a conversation to help our loved ones understand our reality.

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Understanding your own needs

Before you share your (limited) energy with others, however, it’s helpful to figure out what works for you.

Consider these questions to formulate an action plan:

• Who do I want to know this information?
• How much of my experience do I want to share?
• How much do I need to share to meet my health needs?
• When is a good time to share this information?
• What method of communication feels most comfortable for me?
• What method of communication will my audience be most receptive to?
• Do I need to set any specific boundaries before starting this conversation?

Before broaching a conversation about your chronic illness with anyone, be confident in your stance and approach to it. Some people may try to invade with their perspective, and it could cloud the view of the way ahead.

“The type of communication you use should reflect the context of your relationship,” adds mental health counselor Natalie Fraize, LMHC, LPC. “Think about how you are most comfortable communicating and how you usually communicate with this other person about important or personal topics.”

Starting the conversation

Try to find a point of connection when approaching the subject. People hold space more effectively when there’s a sense of mutual understanding.

“Many people are dealing with invisible conditions of some sort, such as mental illness or diabetes, and almost everyone has had a bad toothache or headache at least once in their life,” says Fraize. “This is an opportunity to talk about how it can be a very isolating experience when no one can see what you’re going through.”

How and when you decide to discuss your IBD can sometimes be as important as what you say.

Don’t trigger the conversation on impulse. Any discussion concerning your chronic illness deserves ample time for exploration at a pace that suits you and the person you’re discussing it with.

Plan ahead and set aside a block of time to broach the topic. It might seem like overkill, but carving out specific time and space prepares your loved one for the seriousness of the conversation and gives you time to figure out what to say.

Ensure everyone involved in the conversation is capable of active listening, which helps ensure that everyone’s needs get heard.

Approach the conversation with clarity

Enter the discussion with clear intentions: Is this a moment of release in which you simply want the person to listen? Or are you seeking assistance or guidance in managing your IBD?

Once you know your goals, be succinct, at least at first. Start with the headlines before diverting into the intricacies of the situation.

“You don’t have to go into graphic detail with friends and loved ones, but you might want to flag that you’re editing out graphic detail so they’re at least aware of the reality you’re dealing with,” says Charlotte Fox Weber, a psychotherapist and author of “What We Want.”

You may want to explain the changing nature of IBD to your loved ones to prepare them for any unexpected variations in your behavior, paying particular attention to how you might need them more during a flare-up.

The conversation is often emotional, so allow space for these feelings and use clear language to describe your needs.

“People have a lot of different responses,” notes Fraize, so if their response doesn’t match your hopes or expectations, consider asking them specifically for what you need.

Dealing with inappropriate responses

“When having a vulnerable conversation about an uncomfortable topic, expect the unexpected,” Fraize says. “People tend to say and do inappropriate things and sometimes act out of character under stress, and these types of discussions can have a variety of reactions.”

Some might react with shocked, awkward silence; others may ask intrusive questions or dismiss your experiences with “But you look fine.” Perhaps friends or loved ones will struggle with the details, responding with requests to “stop talking about your bathroom habits.”

“Keep in mind that the person’s response is more about them feeling nervous than [about] you,” Fraize adds.

If their words become hurtful, be upfront about it. Clouding the way forward with niceties and passive aggression won’t help anyone. People can’t help or adapt if they don’t know the truth about your experiences with IBD.

“You can be more specific if certain words hurt you, and request that your loved one refrain from using them,” Fraize suggests.

Remember, the most common reaction is likely to be confusion because invisible illnesses hide beneath the surface. The best response is to use information to educate.

A little communication on how some diseases hide their symptoms will ease the impact on you and bridge the gap in their knowledge.

Explaining your IBD to a partner

Your approach may change when discussing the intricacies of an invisible condition with a romantic or sexual partner.

They’re going to need a little more information than someone who sees you occasionally, and they’ll likely require more knowledge than other family or friends. For example, they’ll probably want to know about your intimate and sexual needs.

Don’t avoid the conversation for too long. Directness can save a lot of pain and frustration when explaining an invisible condition in a romantic relationship.

Break the conversation into bite-sized pieces because not every issue or experience needs dissection on first contact.

Start by discussing the effects IBD and its invisibility might have on the relationship and why the conversation is necessary in the first place. Then, discuss your boundaries, your needs, their needs, and how you can work together as a team, taking it step by step.

Your existing intimate comfort with one another should help pave the way for an easy conversation but don’t rush in expecting immediate understanding.

“If it feels like the conversation isn’t done, schedule a time to finish it later,” says Fraize. The idea is to move at a pace and intensity that both partners are comfortable with but not to avoid difficult conversations.

“Sharing resources is a great way to provide information while allowing the other person to exercise their own judgment about how much they want to know,” says Fraize. “Practice consent in your conversation the same way you ideally practice it in the bedroom.”

Talking with kids about IBD

You can be more frank with adults than with children, and you’ll probably need to modify your language to accommodate children’s inquiries.

“Think about how old the child is and how much information you want them to know and potentially share about you with others,” says Fraize. “Let them know that IBD is not like a cold or the flu, so it’s not something they can catch.”

Setting boundaries

When the core information is out in the open, consider what boundaries you need to set to ensure your needs are taken care of. These could include:

• Establishing how much detail you want to share. “You can say, ‘I’m comfortable telling you about IBD in general, but I don’t want to share my [specific] experience,’” says Fraize.
• Letting your loved one know what information is OK for them to share with others.
• Requesting specific timelines for loved ones to check in with you. Maybe once a week or every other day — whatever feels supportive without being intrusive. Clarify whether you prefer face-to-face check-ins, phone calls, emails, or text messages.

It’s probably helpful to explain, too, that IBD’s unpredictability means your boundaries will likely fluctuate.

Stay mindful of the other person’s experience, too. If you’re sharing some heavy-duty emotional trauma, ask what their state of mind is before forging ahead, and check in when things come to a close.

Remember that even when our problems rise like tidal waves, everyone else’s experiences matter as well.