So as I mentioned in my previous post almost seven years ago, at the age of 28, I was diagnosed with Lupus. Lupus is an autoimmune disease where the body sees its own cells as foreign cells and starts to attack and kill them, this leads to the deterioration of that system. It can attack any system in the body, but it usually goes after the skin, hair, bones, kidneys, muscles, and heart. In my case it first manifested itself on my skin; which now looking back was both a good and bad thing. Bad of course because it ruined my skin and left it with deep large discolored marks, good because it is what helped doctors identify it so quickly.
My 28th year of life was supposed to be one of growth, fun, and love. I was about to complete my first year of graduate school and I absolutely loved it. I was dating/seeing a man named… we’ll call him Z. He certainly was not “the one”, but we had great chemistry together and we were very, very attracted to each other. I think that was one of the reasons why I continued to see him, he was only supposed to be a filler until the right guy came along, but the physical distorted my mental and the rest is history. Anyway as a part of my growth and fun I took a solo trip to the Dominican Republic where I soaked up the sun, food, and hospitality of the people. I can’t go into detail about what happened on my trip because like Vegas what happens there stays there. A couple of weeks after my trip I noticed that I started to develop a rash that was all over my hands, and on both of my eyelids. The skin on my hands started to get extremely dry; it was peeling and developing tiny red bumps. I let it go for a few weeks thinking that this was an allergic reaction to something. I was most concerned with the rashes on my face, for obvious reasons. It was a raised rash that had a very deep purple/reddish color. The women at my hair salon told me to put some sort of astringent that they used in the islands. It had a strong smell and burned like hell, but it didn’t take away the rashes on my eyelids that were now developing all over my face. I also tried cucumbers to soothe the skin on my eyes, and I used some allergy cream, none of these remedies worked. After a few other remedies that did not work, and I had accused the woman who threaded my eyebrows of unsafe and unclean practices, I made an appointment to see a dermatologist.
I wanted to go to a dermatologist that specialized in ethnic skincare. One of my close friends recommended her cousin, who is also a black woman. She was my friend’s cousin so I thought that I was in pretty good hands. However, I should have gotten an indication of what kind of care I was going to receive by the look of the waiting room. It was gray, had metal chairs, and one generic skin ad on the wall. It kind of reminded me of the rooms in an insane asylum. I shook off the weird feeling, and helped myself to three travel size lotions that were arranged in a tray on the table next to me. At this point the rash was on both of my eyelids, my cheeks, and hands. When my name was finally called to see the doctor, I was unsure of what she would say, but I was confident that it was nothing more than an ugly allergic reaction. As I entered the exam room, she gave me an awkward smile and asked me why I was there. When I removed the makeup I was wearing to cover up the rashes, she took one look at me and said, “Oh that looks like Lupus.” She said it so nonchalantly as if I had a zit. I was so taken aback by the tone and magnitude of her statement that I started crying right there in the middle of the exam room. I was crying because this is not what I was thinking he diagnosis would be. I was crying because the only image I had of Lupus up until that point, was one of my best friend’s friend. Who was diagnosed with Lupus when we were in college, and now at the age of 30 had already undergone a failed kidney transplant and three hip replacements. In college Claudia would always talk about how miserable her friend was and how she became a recluse because of her condition.
When the doctor realized how her unsympathetic delivery of the news hit me she started to back track. “You know this could really be anything, it’s unlikely that it is Lupus, why don’t we take some blood tests and a skin biopsy, I am sure it’s nothing”, she said. “Yeah, ok” I said. You should have started with saying that, I thought. I was still shaking and crying as she wrote out an order for me to get a blood test at a lab. Her bedside manner improved when she took the biopsy of the dried flaky skin on my arm that didn’t look anything like what was on my face. Her nurse held my hand as I cried while the doctor snipped a piece of my arm off for the biopsy. I gathered myself in the bathroom and re-applied my makeup. I thanked the receptionist, and walked out of the office. I held myself together until I stepped outside and took in the chaotic scene of Union Square. And once again I began to cry uncontrollably. I was paralyzed from the appointment and soon became unaware of what was going on around me. I called my mom, who was more upset than I was at my doctor’s appointment. She told me in her deep Nigerian accent that, “No such thing is in my family and if that woman were half of a doctor she would know that.” In the midst of my tears and worry I smiled to myself because only my mother would make an insult that made no sense, but would make you believe that she was right. She told me to pray and not to worry about it anymore. I then called my older brother one for his pity and two because he hadn’t called me back in a week and I wanted him to kind of feel bad for not doing so. He, like my mother, re-assured me that it was definitely not Lupus and that I had nothing to worry about. I hung up the phone feeling a little better but I still needed a hug, and unfortunately neither my oldest brother or my mom were able to do that since they both lived in another state. So I called the only family I had in the city, my brother Uche. I asked him to meet me in Union Square, I couldn’t find the motivation to go home after my doctor’s appointment.
He met up with me within 20 minutes of my call, and listened to my experience and what had been going on with me. I started to talk about my pre-mature diagnosis of Lupus, and what I had heard about the disease through my best friend. He gave me the hug I needed, and for a moment I felt a calm settle over me. He told me not to worry and that it wouldn’t help me at all, we sat and talked and he called one of his friends, who is a doctor to ask her about Lupus. After 2 hours of talking and people watching in Union Square, we went our separate ways and I felt calmer about the situation. This calm lasted about as long as my 30 min ride home. Then the crazy set in and things got chaotic…