I had to take several deep breaths before addressing this topic. It's heavy. It's complicated. It is personal.
I decided to write this as a narrative.
When it comes to chronic illness, particularly autoimmune disorders, the path you walk as you try to make sense of the symptoms you're experiencing is daunting. The reality for most who discover they have an autoimmune disorder is that this confusing road becomes a traumatic, life-altering path as well. This is the reality. We love to hear the triumphs of climbing out of illness, but most lessons are in what happened earlier.
When I first started experiencing symptoms a couple of years ago, I kept them to to myself. I had no idea what the symptoms meant other than knowing I didn't feel "right" or "good." I told my friend Missy very early on, "I just don't feel like myself." I proceeded with acupuncture, increased my jogs from five miles to 10 miles in the evenings and eventually saw a therapist. I was told I was simply anxious and offered a variety of pills.
"Just anxious" turned into fatigue, fatigue turned into having to leave work often to curl up on my bed and sleep. Curling up on my bed to sleep turned into having to pull over my company car daily because my vision was blurred. My blurred vision turned into feeling extreme dehydration and numbness in my limbs. This turned into having a hard time holding up my head for hours at a time.
I somehow maintained a very "normal" lifestyle under these circumstances. I worked full time, traveled, kept up my commitments to softball by the lake in Chicago, met friends for cocktails, etc. The few friends I did share some of my symptoms with told me, "You're just depressed." I knew I wasn't depressed, so this was frustrating.
Finally, in 2010, after a flu vaccine, I collapsed. Doctors had no real idea why. The second time I collapsed, they had no idea. My clinical picture was complicated to physicians, and was even harder for friends and family to understand. Within an eight-month time frame, I received eight diagnoses. Physicians who handled my case became weary, friends began to doubt my illness entirely and some family became completely ornery.
I was extremely ill and growing worse by the day, scared to death because I had no idea what was really wrong with me. Rumors swirled among some supposed friends back in my hometown that I had a nervous breakdown. Some insisted to my face that I was just depressed. I think the most comical rumor was that I'd become addicted to anxiety drugs. This latter rumor stemmed from my being placed on inappropriate medications and my body going through massive physical trauma as they took me off. Others in my own family accused me of being inconsistent, insinuating I was making it up because I was able to function some days and not others.
When I was admitted to Mayo Clinic and formerly diagnosed with POTS (postural orthostatic tachycardia syndrome), the tide began to change. I began receiving apologies from people. Physicians back at home in Chicago began to take me very seriously. I received an apology from a cardiologist at Northwestern Hospital who dismissed me entirely as having nothing wrong with me. She told me that people can psychologically make their blood pressure drop like mine was. I received an apology from a psychiatrist who realized I had none of the diagnoses he came up with. He went as far as to put his errors in writing so that I can validate what happened to friends and family. I had to go through a lawsuit to regain my insurance ICD codes (those are diagnostic codes) so that when I regained my health, my insurance accurately depicted what was really wrong with me.
I won. I received a call from a "friend" who had previously informed me that she'd heard I was in Mayo Clinic's psychiatric ward (mind you, I was in their seizure unit). This is just the tip of the iceberg that I am sharing.
There are thousands of people going through what I went through and often worse scenarios. I went through massive posttraumatic stress because of how I was treated by others. How I was feeling physically was lost in the shuffle. The friends that stood by my side, even when they didn't understand entirely, can attest that I was unable to hold up my own head most days, and walking down the hall of my condo proved to be a challenge.
Because I was unable to advocate for myself for so long, it affected my confidence, self-esteem and entire psychological makeup. All of this was happening when I was trying to get well and my health was no longer a priority to anyone involved. Can you imagine?
I don't really know how to accurately articulate for any of you just how traumatizing being ill is, and on top of that having people you love question you, create rumors, gossip and dismiss you. I never wanted to learn all of the lessons I ended up learning, and I'm forever changed by what took place.
I think this article is important because it illustrates the reality of what takes place to countless people. I had very few people believe me during the time I illustrated above. I held tightly to those relationships that did, though, and their support.
This article is dedicated to Laleh Harper and Phila Glass for standing by me with absolute honor and unmatched loyalty when the majority did not. Without their help and advocacy for me, I would have never recovered.
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