Going off to college, the one thing I didn't want to show anyone was fear--especially my parents. I didn't want my parents to see that I was afraid of using my epipen, or that I was afraid of going to the doctor's by myself or calling 911. I worried that if they knew I was afraid, I would loose their trust that I could handle my allergies six hours away from home.
Unfortunately, in 2015, I had more anaphylactic reactions that I had ever had before. Not all of them were my fault and I attribute most of them to the fact that this past semester in particular, I had been more involved and social activities than I have ever been which put me at a higher risk for allergic reactions. Unfortunately, the more reactions I had, the greater my fears of having a reaction and using the epipen. My fears of having a reaction primarily revolved around knowing what was coming after the epipen--the ambulance ride, the ER visit, all of the meds that make me feel awful, feeling like a disappointment to my parents, days of feeling like I have been run over by a bus, the fear of loosing my parent's trust, not wanting to inconvieneince my friends or interrupt plans, etc.
When I am healthy, things make sense logically. As an EMT and someone who has experienced plenty of anaphylactic reactions, I know that I need to use my epipen when I start reacting, call 911 and go to the hospital. In the moment though, when I am having a reaction, I want nothing to do with the epipen, or the ambulance or the hospital. I don't think straight and end up putting myself in great danger.
A few months ago, I had a reaction in my friend's apartment. As my lips and tongue started to swell, my friends (an EMT and paramedic) told me I needed my epipen. I wanted to wait it out, hoping it would go down on its own and not require further treatment. Of course though, my friends know that that isn't how reactions work (and I do to when I am thinking clearly and not reacting). According to my friends, they had to hold me down to give me the epipen since I insisted I just wanted to wait. Of course, the epipen (and some benadryl and a breathing treatment) reversed the reaction and I was cunningly able to convince them that I didn't need to go to the hospital (always go to the hospital after using the epipen, no matter how much you don't want to go).
That night, my friend stayed with me in my apartment. After I fell asleep, she told me I was having night terrors where I would scream in my sleep. At one point, she told me she woke me up and asked me what I was screaming about and I told her that I was dreaming she was chasing me with my epipen. Clearly the fear is real and needs to be taken care of which is why my friends and I are going to talk to a therapist in the near future about how I can control my fears in the moment of me having a reaction.
I guess what I am trying to say is, when I went off to college, I was so afraid of telling my parents about my fears in fear they wouldn't let me go away. As a result, I ended up stuffing and ignoring the fears to the point where I am now having night terrors about my epipen (luckily I don't remember them).
As a food allergy community, I think we often avoid the discussion of the impact of food allergies and allergic reactions on our mental health. While I don't know the exact reason, I would imagine there are some socially constructed factors that play into it. One, in our society, everyone battling any kind of illness/condition/disability is expected to be a superhero. When we look on the news we don't see stories about those living with illnesses/conditions/disabilities who are wallowing in their sorrows--we only see stories about those living with illnesses/conditions/disabilities who are overcoming the odds. While they are nice to see, it paints this false picture that if you aren't strong through it all, you are doing something wrong.
The second is the stigma behind mental health and food allergies. In our society, as much as we want to deny it, mental health is still not viewed the same as physical health. Living with food allergies unfortunately can also have the stigma as being weak or attention seeking when looking for accommodations. Whether or not it is conscious or not, I think that the food allergy community doesn't talk about mental health as much as they should because they are afraid it will make them seem weaker and they are afraid people will start to think food allergies are created from fears of certain foods. Which could result in others not taking them as seriously as the are.
The reality is though, fears can kill. If a fear is so strong that you don't use your epipen or you isolate yourself in an effort to stay safe, it is important to seek help and it is important that collectively as a food allergy community we are more open about talking about fears and how to address them so they don't consume our lives.
I am fortunate enough that my fear only really manifests itself in the moment of a reaction and isn't present on a daily basis. Unfortunately though, that isn't true for everyone. In fact, I have talked to many teens who are crippled by their food allergy fears.
While I haven't figured out yet how to manage my fears, hopefully, after speaking with the therapist I will. If you are dealing with fears around food allergies, I ask that you seek help too. If you are too afraid to speak to a therapist or aren't sure where to start, please at least talk to a friend or a parent--someone you trust. In fact, if you don't know who to talk to, email us at firstname.lastname@example.org and we will be more than happy to lend an ear.
If you have dealt with fears surrounding food allergies and have some good strategies, please comment below. You never know who it may help!