12 Things I Wish People Understood About My Food Allergies

I’m not picky or looking for attention. My long list of food allergens isn’t due to attention-seeking behavior or taste aversion; it’s due to abnormal levels of antibodies in my blood. Here are the 12 things I wish others understood about my food allergies:

1. It’s hard for me to make spur-of-the-moment plans.

Having food allergies means not always knowing if and when safe food will be available. Because of this, it’s helpful to make plans ahead of time, so I can plan accordingly and bring my own food.

2. I can’t just have a bite.

I know so many people who claim to have allergies who constantly (knowingly or unknowingly) eat bites of things they are “allergic” to. People with food allergies can’t just have one bite because even tiny levels of allergen protein can cause an anaphylactic reaction. Please don’t be offended if I don’t want to try one bite of your dish to see if it’s safe for me.

3. My EpiPens are for emergencies only.

A lot of people ask me if I can just eat what I am allergic to and then use my EpiPen the way people who are lactose intolerant can sometimes take a Lactaid pill if they want to drink milk or consume lactose products. EpiPens aren’t meant to prevent reactions. I carry my EpiPen in case I have an accidental exposure to my allergens. I can use it to buy me time before the ambulance arrives.

4. Peanuts aren’t the only food allergy.

Peanuts are a common food allergen, but milk, eggs, wheat, soy, tree nuts, fish and shellfish can be allergens for people, too. Just because something is peanut-free doesn’t mean it’s safe for me or everyone else with food allergies.

5. Intolerances and allergies aren’t the same thing.

When I tell people I’m allergic to milk, people often ask if I am lactose intolerant. The answer is no, I’m not. I’m allergic. People often confuse allergies and intolerances. Allergies have to do with the immune system’s reaction to a protein, whereas intolerances have to do with the lack of enzymes in the gastrointestinal intestinal tract that break down specific sugars (such as the lactose in milk). Allergies can be potentially life-threatening; intolerances are typically just uncomfortable.

6. Food allergies have caused me to have trust issues.

Staying safe with food allergies is a group effort. As much as I try and avoid what I am allergic to, I also have to trust my family, friends and food manufacturers will not accidentally (or intentionally) feed me my allergens.

If I question you multiple times about the way you prepared the food you made specifically for me, please don’t be offended. Or if you offer to make me a safe meal and I decline, it isn’t because I don’t trust you. It’s because I know how hard it is to avoid my allergens. The bottom line is I just want to be safe; it’s nothing personal.

7. If you are in my life, you’re a superhero.

Like I said, food allergy management is a group effort. When I look at my friends and family, I see superheroes. I see people who have spent hours in the ER with me, who have memorized my long list of allergens, who take extra precautions to make sure their hands are clean before touching me, who see me as me and not as my allergies. I could go on and on. When I look at my parents, I see people who have sacrificed everything and would do anything to keep me safe. Without my parents, family and friends, I would probably be dead. I want my friends and family to understand how grateful I am for you.

8. It gets tiring being vigilant all the time.

Living with food allergies is tiring. Preventing reactions is more than just not eating food that obviously contains allergens. It involves making sure surfaces are allergen-free, that allergen-free food hasn’t been contaminated by allergens and being careful of who touches/hugs me. When you have food allergies, letting your guard down can be deadly.

9. Anaphylactic reactions suck.

The best way I can describe having an anaphylactic reaction is that it feels like my body is on fire. I get so itchy it feels like I want to peel my skin off. Then I start to have trouble breathing, and my throat, tongue and lips start to swell. I feel like I’m breathing through a straw that’s progressively being pinched tighter and tighter. Part of me wants to use my EpiPen because I want to make it all go away. The other part of me, though, doesn’t want to use it because I know once it gets used I’ll have to call 911 and go to the hospital, which I hate.

10. My allergies aren’t anyone’s fault.

My food allergies aren’t a result of my eating habits or the things my mom ate while she was pregnant with me. My food allergies are the result of a random biological phenomenon and until the exact mechanism is determined, I would appreciate it if you wouldn’t make accusations as to what caused my food allergies.

11. Don’t feel sorry for me.

Almost every time I tell someone about my food allergies, they tell me they’re sorry. Honestly, there’s nothing to be sorry about. As frustrating as they can be sometimes, food allergies have taught me who my true friends are, to be thankful for every breath I take and have made me a stronger, more caring person.

12. I can still have a life and stay safe.

An ER nurse once told my mom she was stupid to let me go away to college because I would probably end up accidentally killing myself. The truth is, despite my food allergies, I can do whatever I want to do. I might have to do it differently, but I can make it work. Please don’t ever try and limit me because you think you are keeping me safe. Only I know my limits.

A version of this post originally appeared on Food Allergy Survival Guide.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.