Ulcerative Colitis: Is Your Family Getting in the Way of Your Healing?by Tracy Davenport, Ph.D. Health Writer
Ah, family. You love them, but sometimes they can be difficult to deal with — despite their best intentions. And when you're living with a chronic illness like ulcerative colitis (UC) that can involve difficult physical symptoms, you may need to navigate family relationships differently, too. While family can be your main support system, they also may hinder your wellness efforts at times. Learn how to recognize some ways your family may be interfering with your healing and how you can compensate and set boundaries.
Is your family discouraging the best possible UC care?
Finding the best care for your ulcerative colitis (UC) may involve seeking out a specialist who is located far from where you live or who is out of your insurance network. As a result, well-meaning family may try to convince you to choose only doctors who are close to home and within network for convenience and cost savings. It may be helpful to explain to your family that finding the best care can save time and money in the long run.
Are family members making you feel like a burden?
UC impacts you as well as those close to you. Even though data suggest that those living with UC are likely to lead lives that are similar to their healthy peers with respect to social and occupational achievement, bad days related to your condition may require more family support. When flares occur, family members may unknowingly complain as they take on more of the household responsibilities. Reminding them that good days will follow may be helpful.
Does your family question how bad your illness is?
Sometimes only your doctor can see the visible evidence of your UC. Therefore, a family member may say, “Well, you don’t look sick.” While they may mean it as a compliment, it can be hurtful to you and make you feel like they aren’t taking your UC seriously. Explaining that UC involves symptoms that you can’t visibly see, as well as periods of both active disease and remission, may help in their understanding. Let them know that almost half of those with UC are in remission in a given year.
Is your family making your UC all about them?
If you’ve just been diagnosed with UC, your family members me be struggling to adjust, which can lead to issues for you, according to mental health counselor Judy LaPrade. “Change is hard, and desired positive change in major life areas such as eating habits, exercise, increased down time, and communication patterns may threaten other family members. It can feel like it is about them when it is not,” she says. Make it clear to your family that you are making these changes for your health, and it has nothing to do with them and how they choose to live their lives.
Does your family eat poorly around you?
While there is no one “best” diet for UC, there are foods you should avoid. If your family is constantly tempting you with foods that can aggravate your symptoms, this can add constant stress. It can also be a major inconvenience if you are always the one responsible for preparing healthy foods. Let your family know that many of the foods that are bad for your UC are also unhealthy for them. Changing to a diet of healthier foods can benefit everyone in the family.
Does your family discourage exercise?
According to the Crohn’s and Colitis Foundation, you should engage in regular exercise as long as you feel well enough and have clearance from your doctor. Our understanding about exercise and chronic disease has evolved in recent years. Therefore, older family members who were always instructed to rest when sick may discourage your fitness efforts. It may be helpful to educate your family on how regular exercise can benefit you specifically. (For inspiration, check out how this woman with IBD found a passion for Zumba.)
Do your relatives impose limiting cultural expectations?
Culture shapes ideas about what constitutes illness and acceptable treatment, according to the American Family Physician. Therefore, different family members may have different beliefs about what is acceptable treatment for your condition based on their cultural beliefs. If your beliefs differ from theirs, know that it’s your right to seek the care you want. Your family’s beliefs were likely instilled in them at a young age, and you can respectfully decline to follow them.
Does your family interfere with your doctor’s appointments?
Living with a condition like UC can require you to see multiple specialists several times a year. Your family may not understand the complexity of your condition and all the appointments that are required to keep you feeling your best. Educating your family on some of the different aspects of the disease may go a long way in their understanding.
Does your family question your choice of medications?
“Why would anyone ever take that medication?” Many of us have heard this sentiment after a family member watched a drug commercial and heard about all the possible side effects. If you happen to be taking a medication your family questions, it can cause you doubt and confusion. The next time this happens, remind your family that UC treatment is complicated, and sometimes living your best life involves taking risks, including those associated with medications.
Do your family members nag you about taking care of yourself?
Vanderbilt University Medical Center calls this type of non-supportive behavior “miscarried help.” This is when family members are constantly telling you what to do for your disease and infringing upon your self-efficacy. Setting clear boundaries and telling family members exactly what would be the most helpful is a great first step in curbing this behavior.
Healthy Communication Is Key
While it can seem daunting to advocate for yourself among family members, know that it can be simpler than we realize to practice communicating in a new and healthy way to reduce family conflict. “Use ‘I’ statements, as in ‘I want, I need, I feel, I would appreciate it if you…’ followed by a clear description of what that need or feeling is,” LaPrade suggests. “This automatically decreases defensiveness from the listener. These steps will become more comfortable with use.”