Talking to friends and family about IBD

In the words of Taro Gomi, everyone poops. Yet its something that isn’t always talked about. Talking about your bowel habits, and the effect they have on your life, can lead to embarrassment and even isolation. Learn how to talk to your friends and family about your IBD, while keeping your dignity, privacy and sense of humour.

Who should I tell about my disease?

Your body, your rules. Basically, you can tell whomever you want, whatever you want.

You might be scared about opening up to your friends or loved ones, but you might also be surprised by the result. Once they understand certain aspects of your IBD, they will be able to support you better.

What should I tell them?

Some people in your life will need to know more than others. Your parents, children or significant other will need to know more than your teacher or your boss (if you decide to tell them at all).

It’s important for you to have a clear understanding of your disease before you choose to share it with others. This will help answer any questions they might have. Check out our info on Crohn’s Disease  and Ulcerative Colitis, and talk to your doctor about reputable sources of information. It can help to have an ‘elevator pitch’ that you’ve practiced so it rolls easily off the tongue – an overview of IBD and how it impacts you that can be shared in less time that it takes to ride the elevator.

How much you share is up to you. The people you live with might need to know your dietary needs and routine expectation, but all your employer would need to know about is when you need time off for appointments or rest during times of flares.

A few key points you may with to discuss with them:

• There is no known cure. While treatment can offer relief and remission, it is a lifelong condition.
• Every case is different. Some people may need surgery, while others may rarely be troubled by their symptoms. Each person may also experience the disease differently over time.
• It’s not the same as IBS. IBD and IBS can have an overlap in symptoms, IBS can generally be managed with lifestyle changes and over the counter medication. IBD is generally more serious, and includes inflammation and potentially blood loss.
• It’s an invisible illness. Even if a person seems fine from the outside, they may still be suffering from painful symptoms.
• It’s unpredictable. Symptoms can change significantly from one moment to the next. You may feel great upon waking one day, but horrible by lunch time. Or cancel plans one night only to feel perfectly fine the next day.
• It’s not contagious. You can’t catch it from someone, though it could run in families (which is why it might be important to discuss with family). You won’t give it to someone just by being around them, but you can definitely get support from those you share your diagnosis with.

Be aware that some people may be dismissive about your situation. Don’t let it deter you from educating them or having conversations with others.

When do I disclose to someone that I have IBD?

Again, this is entirely up to you. Family and long terms friends are probably the first people you’ll tell after your diagnosis. They can help you come to terms with your condition and navigate treatment options.

You’re not legally obligated to tell your employer about your condition. And if you do share information with them, you have a right to privacy and they cannot share this information without your consent. It may be worth telling your employer if you need extra breaks or reduced hours due to fatigue, or changes to your workload.

If you are dating, it’s not something you need to disclose on your dating profile (but also up to you if you choose to do so!). You might wait until a few dates (or more) in, as the relationship develops, to tell them about having a medical condition. Tread lightly, and make sure you trust the person you’re sharing information with.

The conversation about your struggle with Crohn’s or Colitis is one best held in person (or over the phone/skype if in person isn’t possible). Electronic messages are more frequently misunderstood.

Tell them what will be helpful

Be honest with the people you’re sharing with, especially close friends and family. Explain how it affects you, not just physically but emotionally as well. Tell them what’s difficult, and how they can help you.

What’s helpful for you may not be what is helpful for another, or what someone thinks will be helpful. Be upfront and clear about what you need on any given day, such as:

• Will you do my food shopping for me?
• I’d like to sit on the couch with you, without talking.
• I need help to prepare dinner tonight.
• My house really needs a vacuum but I don’t have the energy.

Some other things you may want to think about raising with your support group:

Respect my routine

If you need time to get up in the morning and go to the toilet a few times, let those who you live with know. Similarly, if there are particular times of the day or sort of places that make things harder for you, tell them so that you can plan around it.

Don’t make me feel guilty if I cancel plans

Ask for patience if you need to cancel plans. Sure, sometimes you’ll plaster on a smile and go out in spite of the pain. So let your friends know that the times you cancel are because you actually can’t make it, and would much rather be out and about. Even if it is inconvenient to them!

Don’t monitor my food intake

You know that certain foods trigger you and make your condition worse. But sometimes you just want to indulge and are happy to pay the price. Let people know that you don’t need them to monitor for you, as you already have an overactive inner dialogue doing that for you.

Don’t tell me ‘it could be worse’

This is your struggle. You have to get up and live with it every day. Of course we all know some people have it worse; we don’t need that pointed out to us like our feelings aren’t valid.

Sometimes I just need you to lend an ear

People often default into giving advice when someone has a problem. However, some days you just want to complain. The problem is that people can’t read your mind, so in the moment let them know what sort of support you need – advice and problem solving or empathy and someone to listen.

Don’t disappear when I need you

Having IBD can be isolating at the best of times, so when you’re feeling down and have the energy reach out to your support team. If someone isn’t there for you when things are tough, maybe they aren’t worth having in your team.

Encourage questions

Remind them it’s ok to ask questions. It’s not just educating your family and friends about IBD, but also about how it affects your life. If they ask a question that you don’t know the answer to, write it down to ask your doctor next time you’re there. If they ask a question that you feel is too personal, you don’t need to answer it. Always remember that you only need to share what feels comfortable.

An IBD nurse or a psychologist may be able to help you with questions you have, about your IBD or how to discuss it with friends.

Most importantly, if your friends don’t react the way you expect them to, try not to get upset. They may not know what to say, or be dealing with their own issues they haven’t yet shared.

Contributed by Taryn Lores