Posted by ImproveCareNow™ on July 24, 2025
Caring for a child with Inflammatory Bowel Disease (IBD) or Autoimmune Liver Disease (AILD) can be demanding, and caregivers often put their own needs last. Chapter 4 of the Caregiver Coping Resource reminds parents and caregivers that taking care of yourself is not a luxury—it’s a vital part of caring for your family. Coping with stress and emotions is a skill that takes time and practice. Through personal stories and expert insights, this chapter offers encouragement and practical strategies to help you rest, seek support, and strengthen your emotional well-being.
From Heidi - IBD caregiver
When a caregiver has the appropriate and supportive resources, they are better able to help the child. It’s important that children also have information available to them at a level appropriate for them. ImproveCareNow and other organizations have great toolkits and resources.
From Chris - IBD & AILD caregiver
I started seeing a therapist shortly after our son was diagnosed. She helped me process my own feelings of sadness and worry as well as supported our son as he worked through his own feelings. During a particularly difficult time, my therapist recommended I consider an antidepressant, and it significantly improved both my energy levels and my overall emotional well-being. Taking care of yourself means different things depending on what's happening in your life. Sometimes, it's about making sure you sleep well and eat healthy foods to keep your body strong. Other times, it might mean talking to someone, like a therapist or a friend, when you're feeling sad or worried. Therapy and medication can help a caregiver cope with the stress of having a child with a chronic illness. A therapist can help teach coping skills and stress management techniques and offer a safe space for you to express feelings. Medication can also be helpful in treating symptoms of depression or anxiety. Taking care of yourself is like a toolbelt with different tools; you pick the right one for the job depending on what's happening in your life. Just like my feelings change, the things that help me cope with life’s challenges also change. Sometimes my body needs rest, so I’ll lay on the couch and watch a show. Other times, I need to let go of stress, so I’ll go for a walk or run. Sometimes I need to be by myself and other times I need to feel connected to others.
From Jane - IBD & AILD caregiver
Taking care of a child with IBD or PSC (or both) is hard. One of the most difficult things for me as a parent, is facing the fears and uncertainties of the future for my child. When I’m having a difficult time, talking to other parents who understand helps me to get through the emotional challenge, and move forward with more hope and positivity. It’s tremendously helpful to me to have a safe space to express my concerns without judgment. One of the best things that we can do is provide insights and tips to other parents based on our own experience caring for our children. In our various PSC/AIH/IBD (Primary Sclerosing Cholangitis, Autoimmune Hepatitis, Inflammatory Bowel Disease) support groups we always start by saying that although we are not medical professionals, as parents and caregivers, we can share our experience, strength and hope with each other. Talking about how to manage symptoms, prepare for a complex procedure or medical appointment or adjust to a new diagnosis is one of the best and most empowering things we can do to support other parents.
From Chris & JaneÂ
Taking time for yourself is not selfish; it's necessary for your well-being. Getting enough rest is vital to maintain physical and emotional well-being. Sleep deprivation can increase stress levels and make it harder to cope with the challenges of caring for a sick child. Engaging in regular physical activity can help reduce stress and improve your overall mood. It doesn't have to be intense workouts; even short walks or stretching exercises can be beneficial. Find activities that you enjoy and incorporate them into your daily routine.
From Maria - IBD & AILD caregiver
Limited check-ins with physicians regarding parental well-being and the absence of parental screening is a genuine concern. As parents, it's vital for us to have regular access to our child's healthcare team to ensure our well-being is taken into account too. Personally, I experienced the immense value of connecting with ImproveCareNow (ICN) when I didn't have adequate check-ins with my daughter's medical team. Through ICN, I found a supportive community, my ICN family, where I could openly discuss the challenges we faced, seek guidance, and receive the necessary support to cope. The friendships and support I gained from ICN were invaluable, as they prevented my daughter's diagnosis from significantly impacting my mental and physical health, ultimately improving our quality of life. It's crucial that we foster a system where parents caring for children with chronic conditions feel supported, validated, and empowered and always know they have a welcoming community to turn to, whether it comes from their child's medical team or external communities.
Dr. Jennie David - pediatric IBD psychologist
As Maria shares above, there can be limited opportunities to talk with your child’s healthcare team about psychosocial experiences you are having as a caregiver. While we as healthcare professionals appreciate that caring for a child with medical needs is tough, we may miss checking in and supporting the caregiver. You are allowed to have feelings related to your child’s healthcare; this can be overwhelming to so many families! If it feels comfortable, consider asking your child’s healthcare team if they can connect you with any resources (e.g., a parent mentor, a therapist). You can also check out a great resource to find therapy resources for parents of children with medical needs in the resource section of this resource.
Noelle Moore - licensed clinical social worker
You are human and you have needs too — and that’s okay! It’s important to have regular check-ins and take time for yourself, allowing yourself to recharge. Below, caregivers provide some excellent examples of practicing self-care. Even if you can take 10-15 minutes a day to do something for yourself–whether it’s reading a book, yoga, enjoying a cup of tea, going for a walk, practicing mindfulness – this is intentional time and space carved out for you. There are some helpful tools online to help you get started on your journey, such as the Calm app, Headspace, Elevate, and more. Your employer and community may also offer free resources – you may just need to ask the right person to get connected, whether it’s through your job’s human resource department, doctor’s office, psychosocial provider, school, or community agency.
Tips for Parental Coping & Self-Care from Clinical Psychologists
- While it may seem obvious, research has shown that caregivers of children and teens with IBD and/or AILD experience high rates of stress, especially within the first year of diagnosis or when their child is experiencing a flare. Encouragingly, there is also evidence that caregiver stress declines within the first year after the child’s diagnosis.
- Finding time and space for self-care can feel challenging, but we encourage caregivers to start with small changes, like setting boundaries about talking about IBD and/or AILD issues during evening time with their spouse or partner, trying a 5-minute guided meditation, going for a walk in the neighborhood, or taking a 15-minute nap.
- Connecting with other caregivers of children with IBD and/or AILD can be such a validating experience that may help you to feel a sense of community and less alone in navigating IBD and/or AILD. Group or one-on-one caregiver support programs specific to IBD and/or AILD are available through IBD and/or AILD organizations and some medical centers. You may also find support organically by starting a conversation with another caregiver in the waiting room during an IBD clinic day or at an IBD and/or AILD awareness walk. While social media can be another way to connect, we always caution caregivers to be thoughtful about the content they read. While some posts may be helpful, it is important to keep in mind that some caregivers may use social media to share inaccurate medical information or unhelpful attitudes, or advice based on their experiences.
- While it may not be feasible for everyone, many caregivers find it helpful to have their own therapist or counselor to support them in this journey. With many practices and therapists offering telehealth visits, therapy may be more accessible than before.
- Therapy is a part of healthcare and is an important resource for many people at different times, especially for caregivers of kids with complex medical needs. Check out the action steps below for free and reputable resources on how to find a mental health professional for yourself as a parent. If you are wondering about the role of medicine for worries or mood, talking with your primary care doctor is often a great first step.
Action Steps and Resources for Parental Coping & Self-Care
Consider a mindfulness practice called “Joy Snacking,” this is a strategy of finding the positive sprinkles in daily life like your coffee being at the perfect temperature, arriving to a doctor’s appointment early, not having to wait at the pharmacy to pick up a medicine, your child getting their favorite provider at the lab
💚 Prefer listening to information? Check out this 22-minute listen of “Joy Snacking”
💙 Prefer reading and visualizations? Check out this read about “Joy Snacking”
💚 Pro tip: Write down your “joy snacks” each day to make this list of positive sprinkles feel more tangible
Gently remind yourself that taking care of yourself is essential to be able to care for your child – you can’t pour from an empty cup!
💙 Remember that life isn’t a solo sport and neither is caring for your child with health needs. Reach out to your personal team (e.g., a significant other, a parent, a close friend, a neighbor) and ask for what you need, like being able to vent or asking someone to spend time with your child so you can do something just for yourself
💚 Review the “Taking Care of Yourself” resource from the Caregiver Wellbeing Special Interest Group
- If you use social media, you can follow this Caregiver Wellbeing Special Interest group at “caregiverwellbeingspp” for other reputable resources and strategies
💙 Review the “Self Care: A Parent’s Guide to Taking Care of Yourself (as well as Your Child)” resource from the Courageous Parent Network
đź’š Watch this 36-minute video on Taking Care of Yourself When Your Child has a Chronic Condition from the Parent and Caregiver Voices Project
đź’™ Review resources from the Pediatric Psychology Caregiver Wellbeing Special Interest Group, including free and reputable resources on how to find a mental health professional for yourself as a parent
- If you use social media, you can follow this Caregiver Wellbeing Special Interest group at “caregiverwellbeingspp” for other reputable resources and strategies