I was 32 years old. I had just survived a miserable pregnancy and rough delivery, but instead of gaining my strength back and enjoying this new stage of my life, I was rushed to the hospital, at risk of stroke and heart failure. My adrenal gland had failed.
Task 1: Figure out what to do with this new human being.
Task 2: Figure out Addison’s disease.
Neither was easy, but with the support of family and friends and a lifesaving endocrinologist, I was feeling hopeful. What I didn’t anticipate six years ago were the ancillary effects of having an autoimmune disease, both medical and social.
Three years after the Addison’s diagnosis, my energy flagged, my mood crashed, and I dropped a lot of weight, fast (20 lbs. in 1 month). Enter Celiac disease. Less than a year after that, stabbing pain in my side brought on the gall stone diagnosis (thought to be caused by my rapid weight loss) and subsequent surgery.
The next year, a fluke metatarsal break revealed Osteopenia (thought to be brought on by my diminished nutrient uptake from the Celiac).
Following that, I experienced significant weight gain that has since been indifferent to exercise and healthy diet.
At that point, it wasn’t surprising to welcome the diagnosis of depression to the party!
Now, at age 38, I feel like I have a tenuous handle on the medical side of things. I consider myself extremely fortunate because my symptoms these days are manageable with diet/exercise/medication, and more often than not, I feel “normal.” I can’t help but wonder “what next?” but try not to dwell. I have a beautiful, healthy 6-year-old son and a supportive husband. My challenges these days are more social in nature.
“Can’t you cheat just this once? “
“A little bit can’t make THAT much difference, can it?”
“Come on, have one more glass of wine, let your hair down!”
My new normal makes for some frustrating social interactions. For the most part, my friends and family have been extremely supportive. They make an effort to be as knowledgeable as possible on Celiac and I am overwhelmed with gratitude for the concessions so many of them make to ensure I can fit in with groups and dine with everyone. A friend’s husband joked with her after a grocery store trip, “You realize that WE don’t have Celiac, right?”
However, not everyone “gets” it. Thanks to the fact that gluten free dining has become a dietary trend, many people assume that I can “cheat” and eat small amounts of gluten. They don’t give a thought to cross contamination. They think that slipping up on my diet just once or twice is a small concession for the pleasure of their company/hospitality. I struggle with how to make people understand that it is not worth it to repeatedly inflame my intestines to the point of risking lymphoma or, at the very least, feeling like crap and setting up residence in the restroom.
My social circle enjoys alcohol consumption. They often seem baffled as to why I won’t have another drink or why I won’t “live a little.” I sometimes resent the lack of understanding, but it is not worth it to me to compound my depression symptoms or become forgetful and miss my array of time sensitive medications.
With autoimmune diseases, there are often a lot more questions than answers. But for this question: Cheat or prosper? Autoimmune diseases aren’t easy, but that choice sure is.
About the Author
Emily lives in Northern California with her husband, son and dog. By day she is an instructional designer for a health care organization. By night she is an avid reader, wine taster, and gluten free champion.
This blog post was originally published by AutoimmuneMom.com, written by Emily, and first published on Dec 12, 2013.