First, I want to take a moment to thank everyone who read and commented on my last entry. The beautiful words of support, understanding, solidarity and encouragement made me smile, breathe, hope and truly reinforced my belief that peer support is essential when coping with this virus.
Now, as promised in my last blog, I will tell my story of revealing my status to my family...
I am infinitely blessed to come from a family of loving, supportive, smart, rational, conscientious people. But this wasn’t enough to calm my fears of telling my family that I had been diagnosed HIV positive. I sincerely believed my family when they said they would support me ’through thick or thin,’ yet somehow I felt that the news that their middle daughter was HIV positive would just be too big a bomb for me to drop on my stable, loving family. My parents had raised three successful, happy daughters, and here I was about to come in and lay this huge burden onto everyone’s comfortable lives.
Talking it over with my friends before I left for New Jersey, I practiced what I would say word for word and how I thought my family would react. In my mind, the scene looked something like this: “Mom, Dad, sisters...I am HIV positive.” MASS CHAOS!!! Mom faints. My sisters erupt into screams of disgust. Dad immediately buys a gun and hunts down my ex-boyfriend.
Thankfully, that is not at all how my story played out. In reality, the fact that I called my parents and told them I was getting on a train to come home in the middle of my work week was a sign that something was wrong. They were braced for some unknown news. In fact, my mother, in her endless supply of intuition, later confessed she had predicted what I was coming home to say. She thought that either I was bringing news of an unexpected pregnancy, or that I had HIV. These things don’t equate of course, but somehow mothers have a way of knowing when something truly life-changing is going on in their daughters’ lives.
I walked in the door to my home in suburban New Jersey, wearing the baggiest sweat shirt I could find (I guess I was trying to hide - from what exactly, I’m not sure). I sat down on the living room couch with my mother, father and younger sister. My older sister works and lives in Pennsylvania. We tried to get her on the phone so that I could deliver my news to the entire family at once. After she did not pick up her phone, I knew I had to proceed without her. I took a few deep breaths and remembered my friends’ words of support. (“Your family loves you unconditionally. They are the ones who will go doctor ’shopping’ with you. They are the ones who will drop everything for you if you get sick. YOU HAVE TO TELL THEM.”) I knew what I had to do...
“OK...so...I went to the doctor this week....and my bloodwork came back HIV positive.” My mother and father immediately came close to me and hugged me. We all cried a little as I showed them the paperwork that revealed my diagnosis. With soft words of support, my mother, father and younger sister comforted me and told me that together we would do everything humanly possible to find the best doctors and fight this thing.
Where was the explosion of chaos that I was so sure would follow? Not one word of shame, disgust or horror was spoken. Instead, the news of my diagnosis was met with strength, support, comfort and rationality. Within minutes my mother and father were on their respective computers, doing what they do best; thinking, researching and attacking a problem scientifically. By the end of the day we were narrowing down the “Best Doctors of New York” list and scheduling appointments with some of New York City’s most renowned infectious disease specialists.
The next day, we spent a great deal of time figuring out how to tell my older sister, who unfortunately wasn’t able to be with the rest of the family when I shared my news for the first time. We realized that delivering the news in person would be best, so my mother, father and I got into the car and began the drive to her apartment in Pennsylvania. About 25 minutes into the drive, however, we spoke to my sister who told us that she was out with her friends, and wouldn’t be home for several hours. Because we did not want to alarm her, we told her to stay with her friends, and enjoy her night. We turned around and decided we would try to tell her again tomorrow.
After our first two attempts at telling my older sister failed, on the following day, my parents decided they had to call her and ask her to come home. They told her over the phone that they had something important to tell her, and that it would be best said in person. In hindsight, this was probably not the best way of handling the situation, considering my sister then had an hour-long drive of contemplating what horrible news may be awaiting her upon arrival.
When she came in, we all sat down together and I shared the news with her. She immediately started crying, and seemed shocked that the rest of us were not reacting emotionally. The rest of the family, who now had two days to cope with the news, and had digested a significant amount of research about how with proper medication the disease is manageable, were able to talk very calmly.
My sister felt cheated out of getting to emotionally deal with the issue together with the rest of the family. She felt angry that she was the last to find out and that there was not a greater effort made to tell her sooner. I think she was simply blind sighted by the news, and by the rest of the family’s seemingly odd, calm reaction. There was nothing else to do but apologize, hug her, comfort each other, and tell her all about what we learned over the last two days; that HIV is not what it used to be, and chances are, I will live a long, happy and healthy life despite my diagnosis. After we talked and cried a little more, we discussed the reality of what living with HIV would mean for me and my family. With time, we all began to feel better.
What struck me most about telling my family was that everyone’s life just kept on moving. None of the chaos or violence that I predicted actually ensued. Instead, we just dealt with HIV the same way we would deal with any other unfortunate sickness. Recognizing now that it was silly (and admittedly a little selfish) to think that my family’s world would stop because of my diagnosis, I see now that whatever happens in life, you can adapt. If you are lucky enough to have the support of your family, that process of adaptation becomes exponentially easier.
Thinking back on the experience with my family brings up an issue I continue to deal with. Reality. As much as I talk about it, write about it, and cry about it, there is still a part of me that hasn’t quite grasped the reality of my diagnosis. This is most likely due to the fact that I feel perfectly healthy, I haven’t begun treatment yet, and not much in my daily life has changed.
By day, I am a healthy, happy, full time student. I’m making new friends and connections at graduate school and I’m involved in multiple extra-curricular activities. To the outside world, I’m only dealing with the everyday stressors of an average student: research, reading and the dreaded final exams.
By night, however, I toss and turn. When my head hits the pillow, the reality slowly starts to creep in. (Or at least some strange version of reality). I have reoccurring nightmares of being chased by an unidentified, usually unseen, deadly being. On the nights when I’m not being chased, alternatively, I’m the one doing the chasing. I run and run after the image of my ex-boyfriend, pleading with him both to listen to the pain he caused me and to reveal the details of his infidelities, so that I can find out exactly what and who caused us both to contract HIV.
With the help of individual counseling (something I highly, highly recommend), my sleeping problems have begun to subside. But I still have difficultly juggling what seems to be two separate realities - two separate lives. Maybe as I tell my story, I will begin to comprehend just how real this new life of mine is.