Dealing With an Alpha-Gal Diagnosis
Fear, anger and anxiety: these are words that describe the life of people that live with Alpha-Gal Syndrome. Going through my first anaphylactic reaction was one of the most frightening moments of my life. And receiving my Alpha-Gal diagnosis triggered a lot of anger and anxiety that I had to work through.
These reactions are completely normal. We all experience these emotions. An Alpha-Gal diagnosis was the last thing I wanted in life.
But I’m here to tell you it gets better. I hope sharing my experience can help you get through this. We are all in it together!
Fear of Anaphylaxis
According to the Merriam-Webster dictionary, FEAR is an “unpleasant, often strong emotion caused by the anticipation or awareness of danger.” Yep, that about sums it up. People who have been diagnosed with Alpha-Gal Syndrome have to constantly battle this feeling.
I remember the first few weeks and months after my anaphylactic episode, which led to my Alpha-Gal diagnosis. I was scared spitless, as the saying goes.
I was afraid to eat. Or maybe terrified is a better description. The first week or two following that anaphylactic episode my body hurt and was-ultra sensitive to seemingly everything. I felt like everything I put in my mouth caused some type of negative reaction. It didn’t seem to matter if it was Alpha-Gal safe, mammal-free, or just plain neutral.
I cried. I cried a lot.
At the onset of my Alpha-Gal diagnosis, just out of the ER, my body was full of Benadryl and steroids. Both affect the mind and emotions, which in turn affect the body. It seems to be an endless cycle of fear.
Shortly after that, I was told to start taking 24-hour allergy meds, Pepcid or generic famotidine, and sometimes other medicines. You have probably heard something similar from your primary doctor.
I was stressed, to say the least. I remember feeling overwhelmed and pretty much terrified, because Alpha-Gal Syndrome had just taken away my favorite foods: cheese, cheesecake, ice cream, nachos, bacon, ham, pork chops, frappuccinos, hamburgers & beef. (But wait, I’m a cattle farmer – how is this supposed to work?) Not to mention that I had been eating a KETO diet that consisted of meat, meat and more meat.
Anger at My Circumstances
I was angry too. Oh, so overwhelmingly angry.
Angry that no one I loved understood. Angry that the doctors wouldn’t refer me to a nutritionist. Angry that I felt bad. Angry that Alpha-Gal Syndrome happened to me.
Did you know that anger is one of the stages of grief? Yes, grief. An Alpha-Gal Syndrome diagnosis can cause true grief.
Anger is the second stage of grief. According to BetterHelp, anger is “an intense feeling of annoyance, displeasure or hostility that arises when one feels threatened, disturbed or otherwise interrupted from a peaceful emotional state.” Often, anger evolves from other emotions, like sadness or hopelessness.
Alpha-Gal Syndrome certainly made me feel all those emotions, and rightly so. My Alpha-Gal Syndrome diagnosis had turned my happy, peace filled life upside-down. Alpha-Gal Syndrome had robbed me of the freedom to eat what I craved. It had robbed me of my favorite comfort foods and the ability to go out to eat without fearing for my life. I could no longer accept friends' invitations for dinner at their home or partake in teacher appreciation meals at work.
Alpha-Gal is a thief and I felt intense sadness and anger. Then anxiety began taking over.
Overwhelming anxiety
Anxiety is real. Dictionary.com states that anxiety is “distress or uneasiness of the mind caused by fear of danger or misfortune; foreboding, worry, disquiet.”
An Alpha-Gal Syndrome can lead to increased anxiety, even to the point of it becoming a mental health issue. (Please seek help if you need counseling. There is no shame in that!)
AGS certainly made me worry about another anaphylactic episode. It made me worry and overthink about everything I put in my mouth, because evidently my doctors did not realize there was much more to this allergy than just avoiding red meat.
My mind was full of questions. Why was I reacting to bottled water? Why did sugary treats or drinks make me feel edgy and gross? Why did my body have inflammatory responses to dairy-free products?
Anxiety, fear, and all the emotions overwhelmed me. If you’ve been through an Alpha-Gal diagnosis, I’m sure they have overwhelmed you too.
Fear, anger, and anxiety are all normal emotions associated with a new diagnosis, especially ones that are life-threatening like Alpha-Gal Syndrome with the associated anaphylaxis that often accompanies this wretched allergy.
Peace Following Your Alpha-Gal Diagnosis
I am here five years later to tell you that it does get better. The emotions ebb and flow, but in my personal life, the peace that passes all understanding has triumphed over the fear, anger and anxiety. I have learned to live with this disease and within its confines. I have learned to navigate life with Alpha-Gal Syndrome and continue to learn new ways to overcome and live well despite its limitations.
I hope that it helps to have all your feelings validated. I believe that we need to ban together and encourage each other every single day. We should continue learning from other Alpha-Gal warriors, support groups, and researchers. May we continue rooting ourselves in the peace of God. He has never, nor will He ever leave us all alone to deal with hard things.
I don’t know about you, but I am going to continue to believe to see the good and positives. I am going to hold on to Ephesians 3:20 (NLT) “Now glory be to God, who by his mighty power at work within us is able to do far more than we would ever dare to ask or even dream of - infinitely beyond our highest prayers, desires, thoughts or hopes.”
Keep dreaming and keep believing.
If you are struggling with these same emotions, feel free to reach out to me. I offer one-on-one counseling sessions for those with Alpha-Gal Syndrome. I would be happy to meet with you online and offer you personal coaching to help you in your Alpha-Gal journey!