My name is Nono Osuji and in Skin Struggles I recount my personal experience and struggle with Lupus. Welcome to the 6th post of my ongoing journey. 


 After my self-diagnosis of HIV/AIDS, I found a lot of material online that supported my case. I researched for so many hours I could’ve earned a fake doctor certificate from WebMD and the MAYO Clinic. As far as I was concerned it was an open and shut case.   Like anything, once you focus on it everything else around you seem to be in reference of whatever you are focusing on and this was no exception.  I saw posters around the city about getting tested for HIV. There was a repeat of the Oprah show about women living with men on the down low, and how some of them had contracted HIV from their partners.  I felt like all of these references were a confirmation of my undiagnosed diagnosis.  Worst of all I didn’t know how I would tell my mother, she had lost her brother to AIDS the year before and now she would have to deal with one of her children having this disease too.  I agonized over my pending illness.  Since the biopsy came back negative for Lupus what else could this be?

Logically, it all made sense to me then, because of my relationship with Z, who had been in jail, and according to my logic every man in jail has AIDS, or is at least at high risk to get the disease because of their sexual activity with each other during their imprisonment.  Have you seen the booty episode from the Boondocks?  It is based on a true story that was featured on Dateline.  I had also read about something like this in Essence magazine; it stated that black women are the largest group of newly diagnosed AIDS cases.  A few months earlier the same topic was the cover story on Ebony magazine. I thought to myself, I am a statistic.  I was absolutely miserable.  I had to share my new findings with my friend, Nelia.  She considered herself queer and I figured she would know more about my pending status.  Looking back now that was the dumbest reasoning, but in my mind at the time it all made sense.  I called her and made some small talk for a bit about our first year of graduate school.  We complained a bit about some of our fellow classmates’ delusions of grandeur about themselves and the quality of the videos they produced, and our overall disappointment with the program and our impending debt.  We then moved on to the subject of my health, she asked me how I was feeling.  She had seen my rashes when they first started to appear on my eyelids and since then she had stayed abreast of my doctor visits and experiences.  I told her about the abnormal blood tests and then I just blurted out, “I have the Hiv.”  She gave a nervous laugh and asked me what I was talking about, “the Hiv”, I replied, “HIV/AIDS.”  “Shut up, you are so dramatic no you don’t, why would you think that?” she asked.  I explained to her my reasoning and revealed what I had recently learned about Z’s jail time, “Oh”, she responded.  I could hear it in her voice that she agreed with me.  “Well you need to get tested,” she said.  Get tested?  I didn’t want to get tested that would only confirm what I had already determined by myself without any medical or scientific proof.  I certainly was not going to get tested. I was content with just “knowing” that I had it, and feeling and being completely miserable because of it.

After I got off the phone with her I lay down, and stared at the ceiling. I was barely paying any attention to the television that was playing a re-run of the Golden Girls.  For the next two weeks I did the same thing all day, lie in bed and let my mind run wild.  I had stopped eating for the most part, I would get up periodically to eat a mini waffle or something, but mostly I would go 2-3 days without eating anything at all.  I stayed on the Internet looking up everything I could find about HIV and AIDS.  I only told a few people, and I did not tell my family at all, whom I thought, were getting suspicious of what was really going on with me.

I called one of my friends from high school, Nina, we hadn’t talked in a while and I needed some sympathy, and I kind of wanted to make her feel bad that we had not talked in so long.  I gave her the run down of my current health situation and told her that I had come to the conclusion because of my symptoms, rashes, and my relationship with a former inmate, that I had AIDS.  Her response was a hearty laugh.  I couldn’t believe her, she hadn’t talked to me in months, one of her so-called best friends, and now she was laughing at my situation, “why am I friends with this heffa?” was the thought that came to my mind.  After her guffaw she calmed down enough to realize that I was dead serious and freaking out.  She tried to re-assure me that I did not have AIDS or HIV, ”and besides”, she added “even if you do have HIV you don’t contract it and then look like Tom Hanks from Philadelphia the next day, you are fine go get tested.”  ”Do you know how many times I thought I had contracted HIV because I slept with some guy and it turned out to be nothing?” she continued.  “Getting tested is the most nerve-wracking thing, but it is necessary so go.” she said.  Looking back on it now, her advice was wise and exactly what I needed to hear at the time, but at that moment I just wanted to get off the phone with her and wallow in self-pity and shame.

I wallowed for a few more days, when my friend Nelia called me and told me that I had to go get tested and that she would go with me if I liked.  She said that our school gave free same day results tests, and that I should do that to find out once and for all.  So I prayed and called on the strength of the God, Jesus, angels, saints, and everyone else in heaven to help me do this, as I placed the call to make my appointment.  My heartbeat started to race and the palms of my hands were almost dripping with sweat.  A lady answered the phone and asked me how she could help me.  You could help me by telling me I don’t have AIDS and you have a Spidey sense that can tell these things and that you are never wrong, I thought.  Instead I replied, “Yes, I would like to get one of those 20 minute mouth swab AIDS tests.” I whispered.  I don’t know why I thought I should keep my voice low, I guess I didn’t want the neighbors to hear and I really didn’t want her to hear me either.  ”Our clinics are closed for the week due to some re-modeling of our facilities, but I can send you to our sister clinic they could help you”, she replied.  “Ok, this was really happening”, I thought.  I had to do it soon before I lost my nerve.  I called their sister clinic and set up an appointment.  Then I called my friend Houda and Nelia and asked them to come with me.  I had called Nina to come with me too, but she couldn’t make it.  She asked me to call her as soon as I left the clinic to update her.  I thought I would need as many people as possible to physically carry me into the clinic.  The appointment was in three days, and I could barely sleep, at that point I was barely functioning as a normal human being.  I practiced how I would react when I got my results if they were positive or negative, I based the results of my tests on totally asinine things.  Things like, if this show comes back in 3 commercials, I don’t have AIDS, or if this person responds to my text in the next three minutes I don’t have AIDS.  Yes, I know that is nutty and crazy.  I went back and forth as to whether or not I should even go.  “This is ridiculous”, I thought, “I don’t have AIDS”, cancel the appointment, the voice in my head would scream.  My agony only intensified the morning of my appointment.  I was awake for most of the night before until I took some Benadryl to help me sleep.  I woke up feeling groggy and anxious, my stomach was doing cartwheels and back flips.  Today was D-day, it was going to be the beginning or the end of something I just didn’t know what yet.