HIV

Living with HIV/AIDS

The experience of living with HIV/AIDS is not something that gets a lot of media attention nowadays. I am certain most people do not know what it is like, how much care one needs, and what the future looks like. Watching stories on living with HIV/AIDS can give people  an updated understanding of what it is like, how people deal with the stigma, and what their risks are. Stories can be educational and heart wrenching—and then education provides relief that today, folks have access to the latest medicines. Initially some may feel empathy, and others frightened for you when learning you are positive for HIV. It is no longer the death sentence it was in the 80s. There have been movies where someone who is HIV positive is very careful with partners and practice safe sex, but the other might change their mind about being intimate and it feels scary to feel like you might get very sick. Two videos (listed in resources) highlight this process for people.  Hearing both examples of the emotional process of learning one has it and then having to tell people, particularly as Jennifer explained the difficulty of telling a doctor’s office for the first time—might help people realize that yone’s own internalized stigma and phobia are another battlefront in fighting this terrible disease.

Jennifer and Raif seem to have in common the treatment they are taking, and the results of the treatment. Both have one pill to take daily and know stakes are high if they miss their medication, but otherwise they feel fairly normal. Jennifer has the support of her family and she has work and her kids so things are pretty normal for her. Raif leads a pretty normal life himself, and both stay they are healthier than they’ve been in their lives. Both experienced passing the “barrier” of HIV into AIDS due to the amount of virus per milliliter in their blood, but both have now a negligible amount.  Despite their insistence that they are healthy and feel normal, both got emotional in talking about their experiences indicating that that internalized stigma still affected them.

Jennifer and Raif likely have some differences, but in regards to their HIV/AiDS treatment, it is the same with one pill a day. Raif’s immediate family sound supportive, but as he said other family members do not want him to talk about his diagnosis indicating some disapproval. Perhaps it is the internalized phobia of HIV/AiDS being a gay man’s disease that led Raif’s family to make the request that he not speak on it. Perhaps that stigma is so easily broken for Jennifer, with her heterosexuality and not having taken drugs, to feel as though it is “less her fault” for getting sick. One other difference between Raif and Jennifer is that Raif’s doctors seem to have believed him sooner, and related his symptoms to HIV/AIDS. This could be a result of stigma as Jennifer’s doctors may have internalized that HIV is a gay man’s disease or a drug user’s disease, two groups to which Jennifer does not belong, and might have not thought about HIV/AIDS in regards to her symptoms, delaying her diagnosis.

These stories might be indicative of the normative experience in the US. One aspect, however, that indicated it might be is the fact that Jennifer was put on an old medication by one doctor, and then had an insurance issue where she had to wait for another. With more and more insurances deciding what they will and will  not cover, insurance related problems are going to be an issue particularly for those in poverty. There are some resources to help with that, however.

Many of those with HIV/AIDS live in poverty and though there is medicaid coverage, access to high quality medical care is starting to become limited to those with private insurance (something medicare recipients have learned long ago).  Medicaid and medicare put restrictions on what medications can be given for which conditions and HIV medications are expensive. As with many diseases, your chance of recovery is somewhat based on your socioeconomic status. There is a stigma against being poor; if poverty is combined with HIV/AIDS status, the stigma could lead to more loss of life. Another factor affecting survivor status of HIV/AIDS is homelessness or lack of access to health care. In substance abuse treatment, I have seen patients without access who do not get treatment, some because they can’t get to it, others because they don’t want to get treatment due to fear. Continuing to share needles or engage in other risky behaviors puts people around them in danger as well.

Also in the references ie article on quality of life. At the time discussed in the article, the quality of life was surprisingly complex. Fears about what medical coverage there would be in the future for those in poor or mid-income communities continues to be a problem with HIV.. There are likely few videos from those who are homeless, those who are living in poverty, those who perhaps have not survived or done well because of their poverty or lack of good medical care. Stigma exists, and poverty makes stigma worse. Though treatments have changed, last 11 years,  the stigma and fears about treatments which might run out for those who aren’t wealthy are still an issue. One hope for the future is the likelihood of a vaccine. As Jennifer said, doctors are more and more hopeful about a vaccine being developed which might be available soon. Although that would be a positive development, the prevalence of mutations and variations of vaccines during the recent Covid pandemic may make the public suspicious. I do hope that people will be eager for it, to stop the spread of a terrible disease.

References

Carter, M. (2012, January 4). Study identifies issues affecting the quality of life of patients living with HIV. aidsmap.com. Retrieved November 1, 2022, from https://www.aidsmap.com/news/jan-2012/study-identifies-issues-affecting-quality-life-patients-living-hiv

Derrazi, R. (2017, May 7). HIV AIDS birthday diagnosis. YouTube. Retrieved November 1, 2022, from https://youtu.be/iEtAwejii08

Vaughan, J. (2016, August 13). My HIV/AIDS story. YouTube. Retrieved November 1, 2022, from https://youtu.be/XsuHCOmYJxc