FPIES: Caring for the Caregiver
Nichole L. Huff, Ph.D., CFLE
Recently I read an article by the Family CaregivingAlliance1 on caregiver stress. As an introduction to the topic, the author compared the need to reduce caregiver stress to the safety rules given just before takeoff on an airplane—the ones that instruct you to place your oxygen mask on first before trying to help a child or dependent in the event of an emergency.
Although it was a simple analogy, I couldn’t help but connect its message to FPIES caregiving: We can’t help someone else survive unless we first take time to help ourselves. I could fully relate. As the parent of a child with FPIES, I can remember moments at the beginning of our journey where it felt like I was fighting to breathe. Restless nights when my husband and I would forego sleep so that we could watch our son in the event of a life-threatening delayed reaction. We spent much of our son’s infant and toddler years walking on eggshells—fearfully tiptoeing around life instead of living it.
At the time, I wouldn’t have considered my husband or me to be caregivers. But as we approach Rare Diseases Day, of which FPIES makes the registry, I realize that’s exactly what FPIES parents are—we are caregivers. We provide care for our children with FPIES so that they can lead healthy, safe, and thriving lives despite their special dietary needs.
In the United States, a disease or disorder is defined as “rare” when it affects fewer than 200,000 Americans at any given time. 2 Sometimes being rare is a good thing—like when you have a special talent or skill that sets you apart. Other times, however, being “rare” can make you feel alone, which adds to your caregiving stress. When my son was first diagnosed with FPIES, I searched for other parents with whom to connect. I so desperately wanted answers, hope, and to find someone who could relate to our situation. Thankfully, organizations like the FPIES Foundation and online support groups for parents of children with FPIES have helped me to see that while FPIES is rare, we are not alone in our battle.
As social awareness increases for children with food allergies, so does research on the effects of allergy management on a family’s quality of life. According to researchers, areas of family life affected by allergy management include family activities (e.g., restaurant meals, social activities, childcare, vacation), decisions regarding schooling, time needed for meal preparation, health and general safety concerns for the allergic child, and parental emotional issues (e.g., anxiety or depression directly related to managing the child’s allergy).3 To combat the ill-effects of caregiver stress, we need to be as mindful to care for ourselves as we are to care for our children with FPIES.
To be an effective caregiver, don’t forget to put on your oxygen mask first. While you strive to provide a safe, healthy, and loving environment for your child with FPIES, chances are you’re putting your physical, emotional, and social needs to the wayside. A good rule of thumb? Work towards balance in these areas.
- How are you caring for yourself physically? Are you getting enough rest? Are you making time to exercise? Are you as worried about your diet as you are your child’s? How do you relax?
- When you’re physically exhausted, you not only wear down your immune system, but your likelihood of developing depression or anxiety increases. Examine your weekly routine and make sure you’re getting the sleep, nutrients, and downtime your body and mind need. Find a gym that offers childcare. Once a month schedule a spa treatment or a round of golf. Stroll your kids around the neighborhood or a local park. Examine your diet. Is it balanced? Rely on food for fuel, not for comfort.
- Side effects of stress, including depression and anxiety, can wreak havoc on our emotional states. If you find yourself short-tempered, easily irritated, or crying more often than usual—or if your emotions ever interfere with everyday tasks such as socializing or driving—then chances are, your stress-levels are too high.
- Depression and anxiety are real—and they can cripple our ability to function in everyday situations. They result from chemical imbalances in the brain and body, often as a direct effect of stress. If you’re concerned that you may be suffering from depression or anxiety, talk to a therapist or a physician about treatment options. Seeking help isn’t a sign of weakness. But rather, taking care of your emotional health is vital to your happiness and your ability to keep stress at bay.
- Do you make time for fun? (Or should I ask: Do you remember what fun is?) Do you spend time with your friends apart from your kids? Do you schedule play dates with other parents and children (or do you shy away from situations that may involve food)? Do you and you partner make time for each other?
- As a busy parent, spending time with other adults often falls off our radar. Especially for parents of children with FPIES, who also have to worry about educating sitters, childcare providers, even family members, about safely caring for our children. If you haven’t already, find trustworthy childcare. Whether you build in a once-a-week coffee date, a monthly book club, a Zumba class, or a standing date night, make time to socialize with other adults.
Remember, caring for yourself (the caregiver) is essential to your overall well-being. The more balanced you are physically, emotionally, and socially, the better able you are to love and care for your child, and to tend to his or her rare FPIES needs.
1Family Caregiving Alliance. Taking Care of YOU: Self-Care for Family Caregivers. Available:
2Rare Diseases Day is February 28, 2014. Learn more at: http://www.rarediseaseday.org
3Cohen, B. L., Noone, S., Muñoz-Furlong, A., & Sicherer, S. H. (2004). Development of a questionnaire to measure quality of life in families with a child with food allergy. Journal of Allergy and Clinical Immunology, 114(5), 1159–1163.