Life threatening food allergies are hard; they are an invisible disability that many people are simply not aware of. As you go through life, you learn to adjust your every moment to accommodate your child and develop new strategies to manage new situations. You learn to educate anyone who will be around your child, since this could make the difference between life and death. I have been so moved by the many people in our lives who have worked to understand and accommodate my daughter. There are a lot of people who truly "get it" and for them, I am forever grateful. Yet, overtime, the constant educating, accommodating, and managing the risks, on a moment to moment basis, are exhausting. I sometimes think of that old term "battle fatigue" when thinking about how I feel about managing the risks of food allergies; I get worn down from the fight.
At every situation for my daughter who is now six, I must plan to ensure her safety. For every school program or extracurricular activity, I need to ensure that she has a plan to prevent a reaction and treat it, if necessary. Surprisingly, many programs are NOT equipped to manage food allergies effectively. For example, we go to a drop off program that is 90 min long, the children are 4-6 years old, and they bring a snack that is supposed to be "nut free". Now at first glance, one would assume, this program has good policies in place, right? However, I emailed the instructor to ask if anyone can administer an Epi Pen, and NO ONE on sight is trained to do this. To add insult to injury, NO ONE checks the snacks, and children run around while eating their snacks without washing their hands. I saw a child with Nutella Dips walking around the playground touching everything. I emailed the program director to explain a few very easy, FREE things she could do to decrease risks. (Also, there are 3 other children with allergies JUST in my daughter's class and their allergies are beyond nuts). I received a luke warm response, saying they will 'think' about my suggestions. So ugh, I am stuck sitting around, asking kids to wipe hands after eating, buying hand wipes for a very expensive program, and holding my daughter's Epi Pen for each class, AND I suspect the director thinks of me as a busy body helicopter mom, (insert eye roll). This is the norm in my experience, NOT the exception.
Consequently, when people make suggestions to me for my daughter to go to a particular class or program, if my energy is running low, I don't even consider it. I know that in order for her to participate, I'm going to have to email, to meet with the director, to educate, and request accommodations, YET AGAIN. And, most of the time, these programs DO NOT have simple, basic, food allergy management policies to BOTH prevent a reaction and treat it, if need be. I feel like it should be illegal that these programs are so uneducated and ill-equipped to manage food allergies, since life threatening food allergies are considered a disability under ADA. Yet, I'm sure that this would be another battle that I simply do not have the energy to fight right now.
The other issue that impacts emotional energy when advocating, is the trauma that I and many allergy moms have experienced. Watching your child go into anaphylaxis is traumatic. It's very difficult to have this happen and have it not affect you. I know for me, I feel a visceral response when I need to discuss this topic and advocate for my child. I need to relive some of the worst moments of my life and my child's life, EVERY TIME I have to advocate. I feel my fight or flight response is triggered- it's completely involuntary (and pretty inconvenient!). I have to try to steady my breathing, focus on the present, and stay as calm as possible, while doing my best to educate, advocate, and problem solve with a person who may not have any basic understanding of food allergy management. It's SO hard. And exhausting. After big meetings, sometimes it takes me a few days to calm down. I lose weight and sleep. And I know this is common among allergy moms; it's what we edure in order to simply level the playing field for our children to participate like every other child.
What is the solution? The only thing I can do to stay afloat is seek support from others when I can, take breaks from advocating, and maybe skip things sometimes. I try to keep the other parts of my life as low stress as possible and keep toxic people out of my life. I need to accept that managing the risks of food allergies is a balancing act of advocacy, burnt out, reliving trauma, and self care. I try to remember the good experiences we've had, and there are MANY. We have allies and people who fight shoulder to shoulder with me, (allergy moms and non-allergy moms alike). I have a village of support both online and in person and so does my daughter. These are the things that sustain me through the rough patches of battle fatigue. Lastly, I try to remember that the fight is worth fighting, even if I need to take a breather every now and then. Maybe my work will help another child one day, another allergy mom will have it a little easier next time, and maybe another child will be safer and more included in the future.