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HIV/AIDS Blog Central

Just Don't Want to Be Lonely

By Reggie Smith

May 23, 2012

I was diagnosed with AIDS in 1988 when there was little or no hope for a long life, so maybe you can understand why it took me so long to decide to disclose that I was carrying the HIV virus. If you can possibly comprehend or remember how crazy the fear and stigma were in 1985, then you know it was appropriate for me not to tell anyone. Had I done so, it would probably have meant that I and my family would have been treated like lepers by many. As a matter of fact, it took me 14 years to tell my mama, children, and the family and friends what my situation was. I wanted to tell family members that would need to know in case of any unexplainable sickness, but I did not want to worry friends and family with something they could do nothing about. Besides, people have big mouths, and I just didn't want to be lonely -- I wanted to be loved.

It was easier for me to share my reality after having lived 14 years with the virus. I had lived well for so long with the virus, that when I finally did disclose my status, it was easier for my loved ones to feel like I would be alright. In reality, people around me had lived in denial about HIV for so long that no one ever asked me if I had contracted HIV, even though as a part of my recovery from drugs and alcohol, I had shared many times that I had lived the same lifestyle as many of my family members and peers who were either suffering with, or had perished from the opportunistic infections that AIDS made possible. My disclosure was motivated by the fact that so many of my friends and family had suffered and died in the early days of HIV. As a result, I was compelled to write my book Surrender to Heal: Seven Ways to Rise Above the Battlefield of Life, so that I could share how I had been so blessed.

Nowadays, many people are still stigmatized and not willing or ready to share publicly about having HIV. I don't blame them, but I do not mind sharing what my experience and evolution has been, and how healing the freedom to live more authentically has been. There is something very healing about not having to act like I am not listening to anything said about HIV. On a spiritual and mental level, freedom from this secret had a healing effect. I came to find out that something recovering people know -- it is that "our secrets keep us sick." I always say, "you can't save your face and your ass at the same time!!"

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Anyway, things have changed a lot, with the treatments for HIV and its associated ailments being more effective. Our fear of imminent death after diagnosis has diminished. There is more hope these days, but there will always be a fear that disclosure means losing your sex life, and nobody wants that! We can talk about stigma in a lot of different ways, but when you get right down to it, being afraid of not being sexual or being loved is what is at the heart of the fear of disclosure. I was blessed to have been in a loving, committed relationship when I was diagnosed. I actually found out I had AIDS when my wife got tested after getting pregnant. If my wife had not been as courageous as she was/is, and if she had left me at the age of 33, I would have been very concerned with finding a mate. I don't know whether or not I would have had unprotected sex with someone else in order to get or keep a sex partner. After all, how do you ask someone who is in their sexual prime to give up that part of their life?

It's not all about sex though. In my experience, disclosure also has to take into account the ability of family and friends to handle the information without becoming an emotional drain on the diagnosed person. I felt like my mother and children would have needed more emotional support than I was willing to give at the time. I was aware that in this case, I needed to be a little selfish for my own good, and the benefit of all concerned. That is why education about the disease, available treatments, and most importantly, how to prevent passing it on or contracting the virus were so important. For me that also meant learning how to stop smoking cigarettes (and everything else), to be very conscious about what I eat, to practice meditation, and to do my best to maintain an attitude of gratitude for every day of life. As a result, with the grace of God, my physical health has been pretty good. I have developed a spiritual relationship with a higher power, been blessed to enjoy a loving relationship with my wife and family, and I have been comfortable enough with myself so that I am not lonely at all. I am loved.

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See Also
More Personal Accounts of Heterosexual Men With HIV/AIDS

Reader Comments:

Comment by: Janices Perry Simpkins Smith (Hillsborough, NJ) Sat., Sep. 7, 2013 at 4:58 pm UTC
I am so very thankful that my college buddie Reggie is doing well physically, spirtually and emotionally. I am so produd of Reggie that he took his challenge and made it into something that is very positive for those who subscribe to the same challenges. I was forunate to catch his comments on tv during the march on washington 50th anniversary. God is really good, I was talking about him to my Mom about a week before and mentioned I haven't seen him in about 30 years or so and then I saw him. May God continue to bless Reggie his wife and their family and friends. Life is good.....as I am 6 years out from breast cancer...
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Comment by: Janices Perry Simpkins Smith (Hillsborough, NJ) Fri., Sep. 6, 2013 at 3:04 pm UTC
I am so very thankful that my college buddie Reggie is doing well physically, spirtually and emotionally. I am so produd of Reggie that he took his challenge and made it into something that is very positive for those who subscribe to the same challenges. I was forunate to catch his comments on tv during the march on washington 50th anniversary. God is really good, I was talking about him to my Mom about a week before and mentioned I haven't seen him in about 30 years or so and then I saw him. May God continue to bless Reggie his wife and their family and friends. Life is good.....as I am 6 years out from breast cancer...
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Comment by: zanele (Durban, SA) Mon., Jun. 4, 2012 at 3:33 am UTC
i have been living with the HIV for 12 years now. my first born died 2 months after birth. i didnt know why because i had no clue what was happening then. until i sow on TV the advertisment about ARV's. that is when i found out that my husband was on ARV and he didnt tell me and he gave me the HIV virious. i confrinted him he appologies that was it for him, to me that was death sentence. i stil young, doing my first year in University he distroyed mu furture. it was very hard in the begginig but i learnt to live with it, we had a baby girl then after the introduction of nevarapin he died in 2004 living me and my daugheter, she is 8 years now and HIV nehative, thank God. but i didnt loose hope becouse i wanted two babies now i have anaother 7 months baby girl again with a lovely man. he is also HIV Positive, i am happy anf health as ever she is also HIV Negative.
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Comment by: Awa S. (The Gambia, West Africa) Fri., Jun. 1, 2012 at 10:22 am UTC
I definitely agree with you, disclosure and its implications go a long way and it needs to be look at very critically and holistically. All of these should be clearly define to the Patient so that they can make an informed choice. The WHO, WHEN WHY AND HOW of disclosure needs to be clear to the patient.It is my opinion that sometimes the process of disclosure is often rushed.

I have always argue that the concept of disclosure is not applied in reality, meaning PLHIV should be guided to disclosure. I am among several an HIV counselor. I commend your courage and would certainly want to share and collaborate with you.

Your last paragraph just affirms the holistic concept of health and that it is imperative that every individual understands this concept so that they could define health, and being fully cognizant of the determinants of health and to view health in a wider context.

Well Reggie,I totally agree with you that the difficulty with disclosure is more to do with sex life and for some having to come face to face with death.

Good job,I hope to continue the communication.
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Comment by: AsianPrince (Kuala Lumpur, Malaysia) Fri., Jun. 1, 2012 at 2:39 am UTC
Yeah, it's the stigma that's really making us feeling sick... with the advancement of medication, the virus is under control... but we cannot control those who are stigmatizing & discriminating the sick...
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RISE4WAR -- Focusing on Wellness, Awareness and Recovery


Reggie and Dionne Smith

Reggie and Dionne Smith

My name is Reggie Smith. My wife Dionne and I have lived with AIDS since 1984. I am HIV+, she is not. We have experienced the suffering of families affected by HIV. With the love and support of many, we have focused on sharing holistic healing solutions for the infected and affected in an effort to diminish the stigma and increase awareness about the unmet needs of U.S. families and surrounding HIV. You are most welcome to share with me here and at my website, ReggieSmith770.


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