She was a model patient in many ways, never missed any appointments, and had done very well health wise. Yes, she had gained a few generous pounds over the years that I had known her but in other ways she was the picture of health. As is always the case when I have patients like her with most medical issues addressed and stable, regular follow visits tended to take a less formal tone and I would make efforts to delve into non health quality of life issues. On one such visit she mentioned her daughter who was in her early twenties and was doing well in her life. That was when I asked what she had shared with her daughter about her HIV diagnosis. This was her answer “I really do not want my daughter to worry too much on my account so I have not shared my diagnosis with her”. I have known her for close to a decade and managed her medically for most of those years and in all these years she had kept her diagnosis to herself and had not shared with her only daughter. In my conversations with her though she does appear to have a close supportive relationship with her daughter but had chosen not to share a life changing diagnosis with her. The question that I asked myself is, ‘was it really worry or was she concerned this could change the nature if their relationship?” The answer to this question is yet to be determined.
This is the life of many people living with HIV even in todays world. In my early days as a physician I did not understand these choices that my patients made and sometimes made some too forceful efforts to urge them to share with family and friends but today I have learned to be more gentle in these efforts. I still remember one young patient who lived with a family member who happened to be a healthcare worker who insisted on her using different plates and gave her plastic silverware. She was fortunate and eventually got a job and managed to change her living situation.
When I worked in Haiti one lady mentioned she only found out her partner was also living with HIV after she discovered he had the same medication she was taking for her HIV. She had run out of medications and was looking around the house for any extra pills. They had been together for several years but had never shared this diagnosis with each other.
In Baltimore city one of my young gay patients when we discussed talking about his diagnosis with his partners said this “I think he may also have it too, but we do not really talk about it.” The truth though is that for most people talking about HIV or any type of STI (sexually transmitted infection) is the best boner killer in the play book. I realize the HIV or safety talk is the last thing that any one who is really in the mood for sex wants to discuss, so how do we do this?
Our overall biggest problem is however the fact that we all underestimate our risk of getting infected with HIV. I still remember the lady who had come into clinic twice to receive post exposure prophylaxis (PEP) to prevent HIV after high risk encounters within a 3 month period but still did not believe she needed to be on Pre-Exposure Prophylaxis (PrEP). I personally believe that most of this denial and our unwillingness to discuss HIV risk is because of the stigma and shame surrounding HIV and diseases that are contracted through sex.
Ideally, safety should start before we get to the bedroom because in that setting most people would do with what they have. Whilst condoms do prevent HIV and most STIs we must all be aware of their biggest limitation ‘humans’. It is safer to assume that a condom may fail and consider other options to enjoy yourself safely than to place all your hopes on the condom.
PrEP taken daily has been shown to reduce risk of HIV by more than 92% and is an option for most people it is important we talk to our doctors about this. In gay men using PrEP on demand has been proven to have significant benefit in HIV prevention at lower cost but this may not work the same way in heterosexuals.
Whilst condoms and Truvada for PrEP do prevent HIV the best preventive tool is reducing the stigma and shame surrounding sex and diseases that we acquire through sex.
Ignorance would continue to kill our young men and women until we get rid of this stigma.
PrEP Locator for US Residents
Dr. Leonard Sowah is an Internal Medicine Physician in Baltimore, Maryland
Feature Photo – https://www.health24.com
Mother daughter photo – www.motivatedmom.com
Truvada photo-Justin Sullivan/Getty Images