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.
Physical
- 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.
Emotional
- 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.
Social
- 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.
References:
1Family Caregiving Alliance. Taking Care of YOU: Self-Care for Family Caregivers. Available:
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.
As the parent of a son with FPIES, Dr. Nichole Huff is
an assistant professor and Extension Specialist at North Carolina State
University. Dr. Huff has a Ph.D. in
Family Sciences and a M.S. in Marriage and Family Therapy. She is a Certified Family Life Educator
(CFLE) with the National Council on Family Relations. Her areas of research include child
development, parent-child communication, and bio-psycho-social health. Dr. Huff also maintains a parenting blog at http://soapboxmommy.com/
It started a few months ago when Lemon caught a stomach
bug. It hit her hard, but I thought after a few days of gut rest she'd be
back to her normal cheery self. Instead her entire system unraveled and she
lost the ability to digest anything. She survived on broth for another
month while we waited for this monster to run its course. It was a lot of
waiting in the dark.
