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As a licensed professional counselor trained in family therapy, I am always curious about how various factors impact family systems. The family is like a mobile in which everyone plays a role in its stability. So it's no surprise that the balance can be thrown off by even the simplest of changes.
The addition of a food allergy into a family system often results in major changes that affect most members of the unit. There have been studies done about the impacts on quality of life for parents/caregivers who care for a child with a food allergy, such as SOAAR's research studies on these and related topics. However, I was curious specifically how non-food allergic siblings felt about having a sibling with food allergies.
To gain some insight on this topic, I created an informal and anonymous survey* with these seven questions (listed with results below), which was completed by 25 participants.
(Parents were allowed to complete the survey on behalf of those too young to complete it themselves)
How old are you?
0-5 years old = 8%
5-10 years old = 32%
10-15 years old = 40%
15-20 years old = 8%
20+ years old = 12%
How many siblings with food allergies/related illnesses do you have?
0-5 years old = 8%
5-10 years old = 32%
10-15 years old = 40%
15-20 years old = 8%
20+ years old = 12%
How many siblings with food allergies/related illnesses do you have?
1 sibling = 80%
2 siblings = 16%
3 siblings = 0%
4 siblings = 4%
What do you do to help with your sibling's food allergy? (Sample of answers):
Allergen Avoidance
"Growing up I also avoided peanuts. I learned how to use an Epi-Pen, too."
"We all eat allergy-free on vacation."
"Don’t eat it at home."
"We don't eat certain foods, don't go certain places, and are extra careful with the places we go."
"Make sure I don't bring (sibling's) allergens into the house. If we are out somewhere I help my parents make sure nobody else feeds (my sibling)."
Exercise Caution
"Wash my hands a lot and I don’t eat any nuts."
"Wash my hands and face if eat an allergen."
"Wash hands, no sharing food, eat the safe food mom brings to parties - same as big (sibling)."
"Avoid it at home. If eaten outside the home wash hands and brush teeth before any contact with (sibling)."
Label-Checking & Epi Pen Help
"I always ask to read labels. I never eat peanuts around my (sibling). I worry about cross contamination when I have my own "dose" of peanut (M&M)."
"I read the food labels to make sure that it's ok for my (sibling) to eat."
"When (sibling) was younger & if my parents weren’t near, I would check labels for (my sibling). I was very outspoken at gatherings to inform others of (my sibling's) allergies."
"I learned how to use an Auvi-Q."
"Get the Epi-Pen."
General Guidance
"Not eat food that isn’t safe for (sibling), help to read labels, sit at the nut-free table with (sibling) at school lunch, speak up if something isn’t safe."
"Personally do not eat any of (sibling's) allergic foods, read labels, question restaurant staff, educate friends and family."
"I tell people about (sibling's) allergies & educate them as to how to keep (my sibling) safe."
"Tell babysitters and teachers that (sibling) has an allergy."
Do you worry about your siblings because they have a food allergy?
Yes = 92%
No = 8%
What other feelings do you have about having food allergies in your family? (Sample of answers):
Worried or scared about sibling's safety, bullying, and being left out
Fear about what could happen
Stressed
Sad when a sibling can't eat what others eat or is left out, and that sibling can't change it
Proud about sibling's bravery
Happy sibling has great people who care
Curious to learn more about food allergies and the science involved in it
Annoyed
Do you ever feel you get less attention because you don't have food allergies?
Yes = 18.2%
No = 54.5%
Sometimes = 27.3%
Please share anything else you'd like to about food allergies being part of your family. (Sample of answers):
"People don’t understand food allergies and always try to minimize it - makes me so mad."
"I get sad because my mom and dad spend much more time with my (sibling) because of his food allergy."
"It really limits our restaurant choices when we go out and sometimes I would love to try new food but it wouldn't be fair for my (sibling)."
"We don't have relationships with some family members because they aren't supportive. We also don't go to some picnics and parties because it isn't worth my (sibling) getting exposed to nuts."
"That anyone with this would do anything to not have it yet people do not seem to care they could die from it. People are very rude and many do not seem to have any compassion or empathy for this as if it’s a choice."
"It’s become a treat for our family. All people abstain from peanuts and shellfish. If there’s an opportunity to have something that could be unsafe we have a standing rule that we don’t accept it and then to make up for it we all make a homemade treat to share... homemade's better! It’s become a fun thing."
"I feel we are doing pretty good with the food allergy."
Conclusions and Thoughts...
Food allergies, as well as any chronic illnesses, are a family disease - they impact each member of the family in different ways, both positively and negatively. Some sibling impacts were highlighted by this brief, informal survey.
Emotions:
Based on these survey results, showing 92% of the non-food allergy sibling participants worried for their allergic sibling, it's clear that non-allergic siblings have a variety of feelings about food allergies being part of their families, with worry being a primary one.
It may not always be obvious how the non-allergic sibling feels, or perhaps they may not be able to verbally express their feelings. Therefore, it's important for parents to routinely check-in with the non-allergic sibling to assess their feelings and perceptions about food allergies and its impacts on the family. Normalizing these emotions (particularly the ones perceived as "negative"), such as sadness, worry, or even frustration, can be reassuring and help them understand that it's okay to feel that way -- that they're entitled to their personal feelings and it doesn't mean they don't care for their sibling when they feel that way.
Siblings may need guidance on understanding how their role can be a positive, empowering one, especially if they're feeling worried or upset. Reminding them that they're an important part of the team and not just on the sidelines of the illness may provide a new outlook that helps them reframe some of these feelings.
Attention:
I was particularly curious whether non-allergic siblings perceived that they were focused on less than their allergic siblings.
Given that just over half of the siblings (54%) denied feeling they got less attention, it suggests that many feel they get a comparable amount of attention as their food-allergic sibling does. With that said, it didn't surprise me that 27.3% sometimes felt they got less attention and 18.2% confirmed feeling that they perceived not having a food allergy equaled less attention on them.
Parents of children with food allergies spend a lot of time focused on safety preparations, which might translate to some non-allergic siblings and an abundance of attention being given to their allergic sibling, therefore leaving less time for them. Some kids may make this known, while others may keep it to themselves, so it's important to have this on the radar. Be mindful of finding time devoted to focusing on the non-allergic child. It can also be helpful to include the non-allergic sibling in food allergy preparations so that it feels like the family as a whole gives attention to navigating the food allergy and not just to the allergic child.
Every family is different, so family roles, relationships, and outlooks will vary. However, this small, informal survey helped me gain more insight to be able to share with others about the emotional impacts and effects on the non-allergic sibling, which isn't always an area of focus.
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*THANK YOU TO THOSE WHO VOLUNTARILY COMPLETED THIS SURVEY. Those who took the anonymous survey were informed about this writer's professional counseling background, the purpose of the survey being for educational purposes, and how the survey results would be utilized in educational materials, such as a blog post. They were told they could reach out to this writer for results if they were interested.