Sex after an HIV diagnosis
Many of the interviewees said that their initial reaction to diagnosis was to stop having sex. This was largely determined by fear of transmitting the virus and fear of rejection. One woman said:
“After diagnosis I was actually scared shitless to have sex with anyone. I thought: 'No. That's it, I'm never having sex with anybody ever again’.”
For some people, these inhibitions persisted:
“I think it’s all mental really … I don’t put myself out there… There has been rejection and all those things before and that feeds back into not seeking any sort of sexual activity with anyone.”
On the other hand, some men described an increase in sexual activity after receiving their diagnosis. They spoke of having condomless sex with other HIV-positive partners as a liberating experience, free of the fear of contracting HIV.
“There was this exploration … It was a bit more exciting and I was being a bit more extreme and doing things that I didn't do before.”
A partner’s accepting response to HIV was important for many people who made a healthy adjustment. Some interviewees – often those in long-term relationships – reported no change to their sex lives after diagnosis:
“It was good, we were just married, so we were having sex quite often. Just normal sex.”
However, a partner who was willing to have sex without fully acknowledging the HIV and who glossed over fears of transmission did not necessarily facilitate positive adjustment. The partner needed to acknowledge HIV as part of the individual while not showing undue fear.
Accurate knowledge of transmission risks (especially U=U) helped many interviewees adjust to living with HIV:
“It does wonders for your mental health and knowing that you can’t transmit the virus.”
But factual information was not always enough to shake off deeply rooted fears:
“I still worry [about HIV transmission]. I’ve gone to workshops … and I’ve read about it a lot … even if I’m doing it the absolute safest way to have sex, I still worry…”
Peer and community support could be helpful for adjustment:
“I got to meet other positive guys, especially the older ones and just sort of learnt from their experience… it helped with that self-acceptance.”
Next week, we will be hosting an aidsmapLIVE event on HIV, sex and relationships. See the sidebar to find out how you can join the conversation on Wednesday 12 February at 6pm (UK time).
‘Frailty’ is a term doctors use to describe a general decline in physical health and a loss of reserves which can affect older people. Frailty leads to a person being less robust and less able to bounce back after an adverse event. A person with frailty may move more slowly, have lost some of their physical strength, have less energy and be less mentally agile. Frailty tends to get worse after each period of poor health or mental stress.
A Dutch study has looked more closely at frailty in people with HIV. Most participants were men in their late forties or their fifties who were taking HIV treatment and had an undetectable viral load.
During the four year study, 8% of the participants became frail. A person was considered frail if they had problems in three or more of the following areas: weight loss, low physical activity, slowness in walking, exhaustion and decreased muscle strength.
Frailty was associated with an increased risk of death. Five per cent of study participants died, of whom just under a third were frail at the beginning of the study.
Frailty was also associated with an increased risk of developing serious illnesses normally associated with ageing. These included conditions like high blood pressure, diabetes, heart disease, kidney disease or cancer. Whereas 31% of frail individuals developed a serious illness, this happened to 14% of people who were assessed as being robust.
The researchers say that doctors should assess frailty in their patients living with HIV. Physical activity is one of the most important things you can do to minimise frailty. This can help you maintain your muscle strength, keep your balance and remain as independent as possible. It’s also important to have a balanced diet, with a wide range of nutrients, and to stay socially connected.
For more information, read the NAM page 'Frailty and HIV'.
Living with visible cancer and invisible HIV
What is it like to have cancer and HIV at the same time? Are clinical services for cancer skilled in supporting patients who also have HIV?
Researchers in London aimed to find out. Their interviewees told them that both cancer and HIV had a powerful impact on their lives. But the two conditions were experienced differently.
One man said:
“I think cancer is deadly…it puts a stop to everything… HIV, I’d take my tablets for a little while and I’d bounce back”.
Cancer could be life-threatening, have debilitating symptoms and far more severe side effects from its treatment. Yet it was socially acceptable to talk about cancer, which opened the door to support and sympathetic responses from other people.
Although HIV was well managed with easy treatment, it was kept hidden for fear of rejection or discrimination. Many struggled to manage information about their HIV status while being treated for cancer. Staff on cancer wards did not always understand the need for secrecy.
One woman reflected on getting support with her cancer that she did not have in relation to HIV:
“So, there I was, able to… because a lot of these friends don’t know about the other one, so I sort of, you know, 10 years on I was getting some support that I never had got… You know I’ve been pulling on that, not in a poor me type of way, but just in allowing people to rally round.”
Nonetheless, it was not necessarily easy to talk about cancer. There was social pressure to talk about it in positive, courageous terms.
For more information, read NAM's page 'Cancer and HIV'.
NHS services for migrants
Although services in the UK’s National Health Service (NHS) are legally obliged to enforce rules on charging migrants and refugees, clinicians working in HIV, sexual and reproductive health have significant gaps in their knowledge, researchers have found.
Of the staff surveyed, 45% said they did not feel confident about their knowledge of healthcare charging and 71% wanted more training.
The survey tested respondents' knowledge and found gaps. For example, 73% knew that HIV treatment is free for all, but only 56% were aware that the treatment of the complications of HIV is also free. (However, treatment for other health conditions in people with HIV is not free of charge.)
While 64% knew that asylum seekers are eligible for free NHS care while their claim is being considered, the survey also showed that respondents were not sure of the definition of key terms, like ‘asylum seeker’, ‘refused asylum seeker’ or ‘refugee’.
Doctors and nurses’ confusion about the regulations could result in necessary health care being inappropriately delayed or denied, the researchers say.
Editors' picks from other sources
The failure-ridden search for an HIV vaccine has delivered yet another frustrating defeat. The vaccine that had moved furthest along in human testing does not work, and the $104 million trial in South Africa evaluating it has been stopped early.
“Revealing every nuance about my health with someone who doesn’t know my favorite color feels rash,” Juan Michael Porter II writes.
from The Body
HIV is an epidemic centred on Black queer folks, cisgender women, and transgender people. The same people who are often left out of conversations around barriers to treatment are the same who are most harmed by a movement centering the optimal outcome – viral suppression as a marker of health above and beyond anything else. We should take an approach to those living with HIV that centres the totality of their health, not their (detectable or undetectable) status.