How Social Media Helped Me Become A Food Allergy Advocate
Grace’s children.
If there was a pamphlet handed out to new parents and caregivers of children after their first allergic reaction to food, that would provide a greater sense of direction of what to do next. But as of right now, there isn’t, which leads to the feeling of being utterly alone. That does not have to be the case. The food allergy community online is strong. We have the power to connect through social media platforms to educate and support one another. We can all become food allergy advocates.
“Your daughter has food allergies.”
Those were the first words I heard when we were in the ambulance on our way to the hospital.
I am sure that all food allergy parents remember how scary their child's first life threatening allergic reaction was. Before that day, I was blissfully ignorant. I had heard about food allergies, but I didn’t know too much about them at all. I only learned about food allergies when my youngest daughter was 9 months old. Within minutes of eating scrambled eggs, her eyes, mouth, and cheeks puffed up. She was not breathing normally and all I could think was to call 911 immediately.
After a few hours at the hospital and after the doctors, nurses, and paramedics explained to us what food allergies were and how to use an epinephrine auto-injector, I felt so lost. I felt scared, anxious, and honestly had no idea where to turn from there. If the medical staff had given us some ideas of where to find support as soon as we left the hospital, I would not have felt as alone and confused.
I couldn’t sleep that night and neither could my husband. The appointments for the pediatrician, allergist, and dermatologist were days away. So, what does a mom do when she can’t sleep at night with racing thoughts? I turned to Google and social media to find answers about food allergies. The first pages that showed up on my Facebook search were Elijah-Alavi Foundation,Friends Helping Friends Food Allergy Support Group, Red Sneakers for Oakley, and Metro Vancouver Anaphylaxis Group. I sent all of the social media pages a private message and typed my heart out about our daughter’s first scary anaphylactic episode.
Social Media: The online community
It felt good to let all my emotions out and type every worry and concern and question that was racing through my mind. Within a few hours all of them replied and were so sympathetic, kind, and nurturing. This was the first time I felt I was not alone in this food allergy journey.
They introduced me to new, safe food products that my daughter can have. From their guidance, I learned the importance of reading food labels every single time, in case ingredients change. I received the life-saving advice of carrying an epinephrine auto-injector at all times. These groups also introduced me to new people across the globe who taught me that food allergy labels are different in other countries. Most importantly, I felt my confidence to advocate for my daughter boosted.
There are groups for everything
Now that our daughter is older, we have just started OIT (Oral Immunotherapy) for peanuts, tree nuts, shellfish, and sesame. At first, I was completely overwhelmed. It is a lot and I needed ideas on where to start and how to organize the different OIT trials that we are doing all at once. Again, I turned to social media. There are support groups specifically geared toward OIT on Facebook and Instagram such as Metro Vancouver OIT Support Group.
“Oral immunotherapy (OIT) works by exposing the body to small amounts of an allergen so the body will be desensitized (less reactive) upon accidental exposure.”
I love these groups because it feels like I have a community that supports me every step of this food allergy journey. We are able to talk to other people going through the same exact baby steps we went through, alongside experts who have been doing it for years. I learned about what types of foods and recipes work for OIT and which do not work. My favorite part of being included in these social media groups is the encouragement that the people give each other. It is so nice to meet others that say, “Hey, I know this is tough, but you can get through this!” Or reading posts that say, “Even though it is challenging, it will only get better from here.”
Creating my own social media resources
These wonderful people I met through social media have been there for me every step of the way. They continue to motivate me to be a food allergy warrior. I speak up not just for my daughter, but for other people out there that might need the same shoulder to lean on in the future. My interactions online have even motivated me in 2019 to start my own food allergy social media pages on Facebook and Instagram. Just search Grace’s Food Allergy Blog and you should be able to find me! I am so thankful that social media has made it accessible to find support in navigating this food allergy journey.
Because I was helped by such welcoming people in the beginning of our food allergy journey, I feel more confident as a food allergy mom. I want to now pass the torch to help others and raise awareness. I want our daughter and other kids just like her to be confident, fearless, and to feel included. There are people all over the world going through the same thing and they are all talking about it online. The food allergy community is larger and stronger than you think. You can join it for free, all you have to do is log-on.