When I Was Belittled at Work Because of My Health Condition

I will never forget the time a stranger asked, “What’s wrong with you?” It was my first week back at work at a hotel where I was a guest services manager. This guest was upset over the parking situation as I was working at a downtown hotel with very limited parking. He asked the clerk at the desk for the manager, and as I came around the corner, he asked that belittling question.

On August 23rd, 2016, I went to the hospital with a severe rash, pain, and no feeling in my legs. The ER doctor had identified the rash as being one of the autoimmune disease, vasculitis. They kept me overnight, and thus began my intense research of what this disease was. I was never told that I would be in for a long haul.

Poked and prodded, I began to feel what was only the beginning. Over three weeks time, I had a spinal tap, numerous CT scans, MRIs, skin biopsies and a nerve biopsy. The final diagnosis, eosinophilic granulomatosis with polyangiitis vasculitis (formerly Churg-Strauss syndrome). This rare autoimmune disease inflames the walls of blood vessels, effecting organs including the skin. It also can effect the nervous system. Here I was, 30 years old, looking at a death sentence.

Upon leaving the hospital, I was given a standard walker. After a couple of weeks of trying to move around with that, my boyfriend had purchased me a red walker with a seat so that I could sit when I needed to.

In October of 2016, I went to the hospital two more times. The first time ended up being a false alarm. The second time, I had strabismus (eyes going opposite directions) caused by the neurological issues within my disease. I had to start wearing an eye patch in order to be able to function. In the months to follow I endured several rounds of Rituxan, a drug that is similar to chemo that attacks specific cells in the body, along with high steroids that puffed out my face.

Thanks to the Family and Medical Leave Act, I was allowed to take a large leave of absence in order to get into good enough health to complete the duties of my job, which brings me back to that first interaction with a stranger asking that belittling question, “What’s wrong with you?”

The responses that came to mind were not appropriate for a hotel manager, so I just responded that I had an autoimmune disease. Just like that, his complaints were not so major that he needed to speak to a manager and he returned to his room.

I am not sure what upset me more: invading my privacy by asking an inappropriate question or backing down because I seemed incapable of assisting due to my illness.

Living with this disease has been a constant battle. The constant up and downs with the high steroids. The constant doctors visits. The bills I owe on… it is a lot. But after leaving my job, I found strength and I re-found myself after my disease. I have brought myself almost into remission. I did that. Yes, my doctors, the medicines, the lifestyle changes helped, but I brought myself to this point. So, what’s wrong with me? Absolutely nothing, and no one should ever make you feel otherwise.

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