Living with Life Threatening Allergies
My Personal Experience
Anaphylaxis is a severe allergic reaction that can be life threatening. The possibility of being exposed to a life-threatening situation can cause anxiety for the person with the allergy as well as friends and family. I grew up with an allergy to peanuts and tree nuts that became severe over time. I have early memories of my tongue swelling, breaking out into hives, vomiting, and taking trips to the hospital to be treated. These were “moderate” reactions, but not life threatening at the time. When I was 17 years old, I took a small bite out of cookie at my Nana’s house and knew right away this reaction was going to be more intense. My dad and grandfather drove me to the hospital immediately to be treated with IV medications. I initially responded well to the treatment and the swelling in my mouth subsided, but a while later I experienced a secondary reaction which resulted in anaphylaxis. I remember telling medical staff my breathing was getting worse before not being able to speak or take in breath. I do not remember anything after this until I regained consciousness.
I was later told by my grandfather that a nurse was not optimistic about my prognosis and directed him to contact my mom. I now understand both my dad and grandfather were somewhat traumatized by this experience. I remember them tell family members about how scared they were and that I was lucky to be alive. I had to stay in intensive care with a nurse who was called in to work just to monitor me. This is the first time I felt guilt about having allergies. It was Easter long weekend and I had taken this lovely, caring nurse away from her family to sit and watch me so she could intervene immediate should my breathing become poor again. This was also the first time I had been educated about secondary reactions and anaphylaxis. While I had experienced several allergic reactions, none of them were nearly as severe as this one.
Anxiety Symptoms Are Normal After Anaphylaxis
After being discharged from the hospital; my family and Ibecame hypervigilant around food, eating out at restaurants, and family holidays. My cousin, who was a child at the time, all of a sudden was scared to eat nuts out of fear that something bad would happen to him. The adults, while well meaning and needing to process this event by re-telling this story too many times, had managed to whip up anxiety in family members without allergies. I remember trying to reassure my little cousin that he would be safe it he ate nuts, but my story became a narrative in his mind that told him nuts can kill people. Anytime I experienced a tingle in my mouth or an itch on my skin, an immediate alarm went off in my brain telling me that I was in immediate danger. I did not trust ingredient labels, relatives, or even myself when it came to food preparation. I learned to use an epi-pen and was told to use it immediately before attending the hospital. Despite having a medical emergency plan, I was still experiencing excessive anxiety and feeling like there was a constant threat looming.
Coping With Allergy-Related Anxiety
It took years for me to me to settle into a world without feeling hypervigilant most of the time. I had to begin with challenging my thinking along with using breathing to calm my brain. It wasn’t logical for me to believe I was in persistent danger when actual risk of anaphylaxis is rare. I learned to use relaxation techniques and progressive muscle relaxation to accept that I do have other food allergies that cause mild allergic reactions that I can tolerate without my brain going to worse case scenario. I learned to play detective and ask myself questions to appreciatemost of my thinking about allergies was not rational.
I have learned to appreciate the improvement in food labels with allergy warnings and for learning to advocate for myself when it comes to communicating my needs. I am grateful that I have friends and family who have learned how to prepare food safely for me and feel comfortable eating in their homes instead of isolating myself from social interactions. There are a small percentage of folks who do not empathize or recognize, but I accept that they are not in the mindset to understand instead of taking it personally. I have practiced gratitude for the many other blessings I have instead of focusing on what I am unable to control. I often aske clients what they would go back and tell themselves after they have experienced challenging times. I would tell myself, my family, and other families that allergies can be well managed. Take a little extra time to educate yourself, carry epi-pens, and have a plan for worst case scenario. Take less time allowing anxiety to take over your mind so you can live a fulfilled life.
Blog Post by Registered Social Worker, Jenny Lynn’s-Mouyois