Something that seems like it should feel so natural - navigating interpersonal connections and socializing - can be full of fear, worry, and discouragement for those of us with chronic illnesses such as IBD and IBS. You might start to question yourself: How do I talk about my symptoms with my family and friends? Will my IBD or IBS affect my current relationships? Will I be able to have new relationships? And how should I take care of ourselves mentally?

When to communicate about my chronic illness?

One of the hardest things with making friends or going into a new relationship when you have chronic illness is deciding when to communicate and how to communicate your chronic illness. Here are a couple of suggestions on the timing and approach of the communication to help you create an environment that is beneficial to your condition and well-being.

The Sooner You Tell People about Your Illness the Better

When it comes to the timing of communicating your illness to other people, the sooner the better.

It is easy for people to put up facades and do not tell their friends about their illness, worrying about negative reaction from their friends, thinking that it might be easier to tell them later on. The longer we put up a facade, the longer we play a role that is not conducive to our body and as time goes on it gets hard to tell them.

Telling people about your illness and looking for their response is sometimes the best filter for figuring out if someone is worthy of your time and energy. It helps you find people who are empathetic and comfortable with your illness. If people ask questions or are interested and wanting to put in the work to understand what you are going through, it is a great sign of mental maturity and empathy and that goes a long way in fostering a healthy and long-lasting relationship.

What to know about friendship with chronic illness?

Every friendship in life is going to ebb and flow, even without chronic illness. But when our friendships are ebbing and flowing due to our IBS/IBD, it can feel a lot more triggering and a lot more difficult mentally. This is because our brains go right into thinking:

  “Was it something I did?”
  “Is it because my illness is too much of a burden?”

It is really easy to fall into that thinking that we are a burden even though we are absolutely not. That is why we need a mindset that is better for our conditions when we deal with ups and downs in our friendships.

Mindset 1: Growing apart “Naturally“ vs Growing apart due to Chronic Illness

When coping with losing friendships, it is important not to attribute it to your chronic illness, but to look at it in the same lens as naturally growing apart. We’ve all had those friends may be really close in college or as young adults, and then we just grew apart because our interests changed, or we moved, or we just became very different people. Even though those breakups can still feel difficult, we accept it as a natural ebb and flow. It’s not that different when our friendships ebb and flow due to our chronic illnesses. The reason we grow apart is not our chronic illness, but the fact that our interests and lifestyles are no longer aligned, and that we naturally become very different people.

Mindset 2: Abundance vs Lack Mindset

For people with chronic illness, it is really easy to fall into a “lack” thinking. We tend to think: “What if I don’t find anyone else that would want to be my friend or want to date me with my chronic illness?“ This thinking will make us cling onto existing friends, even when they try to push our boundaries too far with our illness.

It helps when you realize that real and genuine friends take the time to understand your needs and boundaries. By releasing friends who don’t serve you, you are actually making room and energy to form new genuine friendships. It is important to have an abundance mindset, and to know that there are countless people in the world who would become better friends or partners – only if you make room and energy for them by letting go of unhealthy relationships.

How to navigate social environment with IBD/IBS?

It can be very hard to feel like you can have any fun around people, because so much socializing is around getting food, alcohol and coffee. All of them are potentially triggering for the conditions. Here are a couple of ideas to help you navigate these social settings while having fun and taking your disease into consideration.

1. Know your social boundaries and stick to them. Consider how much social time you are able to handle with your body. Take note of the triggering things that you have to be careful of and avoid them. Plan ahead of the social setting so you know that you have control of your surroundings and your back is covered. Sometimes preparing an escape plan is also helpful: for example, if you are at a friend’s house, you know that when you are under the weather, you can always get out of their house and drive your car back home. Once you have these boundaries and plans, stick to them. To make it easier for you to stick to your plans, It is helpful to talk with other people ahead of time about your restrictions.
2. Redefine “fun“ for yourself. Consider how much social time you are able to handle with your body. Take note of the triggering things that you have to be careful of and avoid them. Plan ahead of the social setting so you know that you have control of your surroundings and your back is covered. Sometimes preparing an escape plan is also helpful: for example, if you are at a friend’s house, you know that when you are under the weather, you can always get out of their house and drive your car back home. Once you have these boundaries and plans, stick to them. To make it easier for you to stick to your plans, It is helpful to talk with other people ahead of time about your restrictions.

How to create and maintain boundaries

Being able to create and maintain boundaries is really important for interpersonal relationships.

When it comes to creating boundaries, the biggest game changer is to really realize that in order to create a successful boundary, one must fully understand the consequence of the boundary. Before setting a boundary, you should look at what are all the outcomes of setting this boundary and think if you are fully OK with each one.

Here is an example scenario. Maybe one of your friends comments on your weight a lot with your IBD and that does not feel good to you, so you replief back by saying: “hey, I'm not OK with you talking about my weight. I would love for you to not do that.” The ideal outcome is that they stop talking about your weight. But in the case that they ignore your feeling and continue to mock at your weight, you should be able to pull back and spend less time with them. In return, they may also choose to spend less time with you as well. But for you to maintain this boundary, you have to make sure that you are OK with this possible consequence when you set it up in the first place. If you cannot maintain the boundary, you are sending people a message that your boundaries are not to be taken seriously.

At the same time, it is important to realize that no matter how other people respond to your boundaries, you should always be proud of yourself for setting up the boundaries because you are taking steps for creating a healthy environment for yourself and for your relationships.

The most important relationship is always the one with yourself.

You have a lot of things going on in your life, and it is essential to remember that other people’s acceptance is not your responsibility. You can encourage and guide people towards understanding and acceptance, but it is not your job to hold their hands the entire journey. When you tell people about your illness or when you set up a boundary, you should not expect them to support or even understand you fully. It is not because you aren’t open or vulnerable enough, it might be they are ready or in a place where they are willing to put in that work and time for you. Remember that other people’s reaction is a 100% reflection of themselves and your conditions have nothing to do with it.