How to Set Boundaries When You're Living With Ulcerative Colitis

Patient Expert
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You may think of boundaries as a list of things you can’t do or things you’ll miss out on, but that’s not always case. Boundaries are behaviors and actions that you’re willing to give and receive. And I don’t know a single person with ulcerative colitis (UC) who couldn’t benefit from setting a few extra boundaries. Living with UC means we need to be willing to do whatever it takes to put our health first, and in most cases, that means creating a healthy set of boundaries.


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Your goal is to protect your long-term health

The goal behind setting boundaries is to protect your long-term health. A boundary is something that helps to shield you, preserves your current health, and sets you up to be able to handle large UC setbacks in your future. By putting in some of the uncomfortable work now, you’re ensuring a happier and healthier you down the road.


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Express your needs clearly

When loved ones see us suffering, their first instinct is to do whatever it takes to make us feel better, and as you may know, it can have the opposite effect. Step one to setting personal boundaries is to express what you need from those around you clearly so they can better help you. This is especially key when you need some alone time or don’t want certain visitors during a hospital stay. While our loved ones’ efforts are generally well intentioned, it’s important to be honest with them.


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Setting expectations is key

Much like with you need to express your needs to those around you, you also need to set expectations. Boundaries are hard, and frankly, most people don’t like them if they aren’t their own. But sometimes, having those hard conversations is necessary for your health. Maybe you don’t want your mom to come to the doctor with you anymore, or you know you’ll have to miss your friend’s wedding because of your condition. Being upfront about what you need, and more importantly, what you can offer to those around, will set a baseline for expectations that everyone can respect.


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Put yourself first

Putting yourself first can be a difficult concept for people with UC or other chronic illness. The guilt we live with can be overpowering, which can cause us to ignore our own needs to support those around us; yet, this can be a detriment to our health. I urge you to be willing to put up boundaries that put your health first whenever you can. Your UC will do it’s best to continually bring you down, and if you fail to put yourself first, it has the power to succeed.


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Boundaries with family members

Families are wonderful, but they can also be incredibly stressful. It is OK to set boundaries with your immediate family to prevent stress, anxiety, and, ultimately, your UC from flaring up. If you need to skip this year’s family holidays or other gatherings, you’re allowed to do that. Your family may disapprove or be disappointed, but if you know that a family gathering will do more harm than good, put up that boundary.


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Boundaries with friends

FOMO (fear of missing out) is a UC patient’s worst enemy. Often, we’ll continue to push ourselves to the point of sickness so we don’t miss a moment of fun. If you find yourself feeling sick or fatigued after hanging out with your friends, it might be time to set up some healthy boundaries around activities you do with your pals. Your true friends will understand, and they will likely plan more activities you are better able to participate in with your UC.


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Boundaries with your job

Stress can cause UC flares, so a stressful job can be a challenge. Even if your boss has high expectations or coworkers depend on you, remember to put yourself first. Late nights and tight deadlines can put stress on the body, and if you’re regularly under stress at work, it may be time to have a talk with your HR department or boss. Let them know you need a hard stop at 5 p.m., or that you can’t work weekends. You need to be healthy to be a good employee, and your employer should respect that.


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Boundaries with doctors

A doctor’s job is to help you manage your UC, but your relationship should be a two-way street. If your doctor isn’t respectful of your time, energy, or emotions, it may be time to set a few boundaries. Do you feel comfortable asking questions? Are you getting all your questions answered? Do you feel respected? If you answered “no” to these questions, it may be time to stand up for yourself and voice these concerns with your doctor, or, in some cases, seek out a new doctor.


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Create boundaries with your online life, too

With a disease that can be isolating, many people with UC find reprieve online. Although the internet can be a place for companionship and understanding, there are plenty of times it has the opposite effect. If you’re finding that what you’re reading about UC online isn’t helpful or is scaring you, put up an internet boundary. Give yourself a break from social media, let your mind rest, and go back when you feel like you are ready to digest the information you see without getting overwhelmed.


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Boundaries don’t have to be permanent

Setting boundaries looks different for everyone. If you’re afraid of offending someone or letting others down, remember that setting boundaries is about doing what is best for your health. Those who truly care for you will understand and support you.

Remember, boundaries don’t have to be permanent. Maybe you need stricter boundaries during your flares or a hospitalization than you do at other times. But by communicating clearly with others, you can reduce some of the stress that comes with UC.