We know all caregivers can experience big feelings when their children are diagnosed with a chronic illness and face complex and ongoing medical needs. As part of coproducing the comprehensive Caregiver Coping Resource, the resource team reached out to caregivers who identified as dads for their insights into caring for a child with Inflammatory Bowel Disease (IBD) and/or Autoimmune Liver Disease (AILD). In honor of Men’s Mental Health Awareness Month, we are highlighting some of those insights – from Chapter 5 of the Caregiver Coping Resource.
From John B, a caregiver for a son diagnosed with PSC/AIH at age 13
This is an upsetting diagnosis for caregivers and newly diagnosed individuals. Be involved and present when needed. And also, help your child (and yourself) understand that this diagnosis does not define your child and your relationship with your child.
Even if your child doesn’t talk often about their diagnosis, they are thinking about it. As a parent it has been a constant struggle to find the right level of discussion with my child about their diagnosis and associated events. Also, this can be a tremendous strain on you and other family members, in addition to the patient. Constructively communicate and create opportunities for other loved ones to do so.
There is more research leading to more curative opportunities today than there were when my child was diagnosed. There will continue to be research building on prior studies. So, there is continued better understanding of these diseases. Much of this has been driven by caregiver advocacy.
If you have the capacity, and you might want to, find a way to involve yourself with a caregiver group advancing an issue you feel is important to this disease.
From John L, a caregiver for a teenage son diagnosed with Crohn’s and Celiac
Take a deep breath, you may be the master of the universe, but you cannot control this.
You are going to try but this thing will do what it wants to do. You do not have IBD/PSC/AILD, you have to love and support someone and teach them how to live and love with it. I have even had discussions with my son about how I wish I had this, and he could not have it, and he told me no way, he can deal with it, and I will deal with my own stuff. The kids are tougher than we think, even though we don’t want them to be. Doctors and family can be a challenge especially when you are eating a specialized diet for your kids’ condition. They just don’t get it. There is nothing you can do to get the doctor to understand; they have their toolbox and best intention, and then we do the rest.
In terms of family and getting everyone on board for holidays, we took over all the traditions, we do our best to honor all the old ways of doing things, but now there is a new way, and if you don’t like it don’t come. My son’s health is more important than a cookie ingredient or two. And remember even kids with IBD get stomach bugs from time to time, not everything is a relapse.
From Isaac, a caregiver to a son diagnosed at age 2 with Very Early Onset IBD (VEO-IBD) and age 8 with Celiac
Try to do the research but rely on the doctors and professionals, not Google. If you go down the Google rabbit hole you will immediately find either the worst-case scenarios or sometimes just straight nonsense that will give you some sort of unrealistic expectations of some instant cure. Realize that just because you can’t control the situation doesn’t mean that you can’t control how you react. It is important that you provide calm, realistic, and constant support for not only your child who has been diagnosed, but also for any other children you have.
Initially there was a lot of concern about having a “normal” childhood and making sure that our son was going to still be able to experience all of the same things that his friends did. It was a straight fear response to the unknown, but it took time for sure to realize that how we react is really the only way that our children know that anything is different, and accepting their normal is entirely normal.
Advocate for your child, and don’t be too proud to ask for help from the professionals at the hospital.
The hospital has the resources to help families through the fights with insurance companies, schools, employers etc. It is a long, exhausting process, and trying to do it without the professionals who deal with this on a regular basis makes it nearly impossible.
Action Steps for Caregivers who Identify as Dads
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 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
💙 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
💙 Watch this 36-minute video on Taking Care of Yourself When Your Child has a Chronic Condition from the Parent and Caregiver Voices Project
💚 For a Dad-focused resource, check out this 39-minute video from the Parent and Caregiver Voices Project
Everything we do in ImproveCareNow is magnified by the efforts of thousands of improvers! No action is too small; here are some ways to get started:
💚 Join the Patient Advisory Council (patients with IBD who are 14+)
💙 Join the Parent/Family Advisory Council (parents/caregivers of young people with IBD)
💚 Participate in our Current Research Opportunities (subject to eligibility)
💙 RSVP to join us at one of our upcoming ICN events
💚 Subscribe to blog updates to stay #InTheLOOP with our IBD stories
💙 Download, use & share our free, co-produced IBD resources
💚 Connect with our welcoming & supportive pediatric IBD community and receive IBD resources, community stories, and ICN updates & opportunities
💙 Donate to ImproveCareNow – we are proud to use every dollar donated to advance our mission!
Our mission is to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network.
