In 2016, I participated in a project for a Nevada photographer. Her goal was to publish a book containing stories of people finding “Beauty in the Desert.” Below is her description of her project.
Everyone has fought a battle in their own lives and has gone through something hard. This is what this project is about. See the beauty in something when you didn’t see it at first. Showcasing each person in their own light and beauty…. This is not just about taking a photo in the desert and slapping the words ‘Beauty in the Desert’ on it. It is about seeing things in a different way. Truly taking a look inside yourself and all that is around you.
Adrenal Insufficiency is my desert. It is hard to find beauty in the words “Diseased. No cure. For life.” But, there IS beauty. I just have to embrace it. I used this opportunity to take formal pictures without hiding my cortisol pump and without hiding my disease. It was my way of boldly proclaiming, “Yes. I have Adrenal Insufficiency. Yes. I am different. Yes, there is beauty that comes from this desert.” Below is my story interspersed with her photos.
Many people in the chronically ill community are able to look back and reminisce about a time in their life before they were “ill,” “sick,” or “diseased.” I do not have that luxury.
I started showing signs of an autoimmune disease at a very young age. In early elementary school, the medical community labeled me as hypoglycemic. I wore a medical alert bracelet and was constantly singled out due to my requirement to eat food every two hours on a very regimented diet. Often, what makes you different also makes you a target. Early childhood memories are filled with incessant bullying.
As I entered middle school, the treatment for hypoglycemia stopped working. My health was rapidly deteriorating. I continued to drop weight, and I developed an unnatural tan. Many in the medical community did not take my plight seriously. All they saw was a young girl with “model like beauty” crippled by anxiety. Why should a teenager complain about being tan and skinny?
At band camp my freshman year of high school, I fainted and began having seizures. That finally got a doctor’s attention.
With that attention, I received a new label: Primary Adrenal Insufficiency, also known as Addison’s Disease.
In essence, my body cannot process any form of stress. Be it the physical stress of breaking a bone or running a fever, the emotional stress of a fight with a loved one or the joy of reuniting with a dear friend, the mental stress of completing a difficult test or driving in congested traffic – if I do not take pro-active measures (including a constant supply of medicine), any one of those scenarios could lead to my death.
There is no cure for Addison’s Disease; there is only treatment that attempts to normalize my life.
That was a lot of information for a 15 year old to take in.
At first, I denied it. I hid my new label. I viewed it as something that made me weaker than others.
In 2013, my disease almost killed me. After countless doctor appointments with numerous specialists, I received a handful of new medical labels, including Post Traumatic Stress Disorder (PTSD) from medical trauma that almost took my life.
In 2014, I received a new method of treatment for my disease.
Suddenly, my invisible illness became very visible. I began using an external pump to deliver my medicine. While my quality of life improved, my ability to blend in and appear “not diseased” decreased. This small pump that is strapped to my body at all times makes me look visibly different.
But this medical device, this external artificial adrenal gland, this pump, has enabled me to live my life more fully. I cannot ignore my disease or my medical labels. I cannot wish them away. Denial will only hurt me, and that could cost me my life.
I have a love / hate relationship with this cortisol pump. I love that I am no longer swallowing oral medicine five times a day that was destroying my stomach. But I hate that I have to be careful about the tubing, otherwise I can rip it out, causing myself pain. I love that I do not have to wait for my medicine to kick in as it is now being delivered at all times. But I hate watching people cringe and react with extreme discomfort as they realize the complexity of my life.
Instead, I shall embrace my diseases, my labels.
I shall find beauty in this desert.
I shall remain Clearly Alive.