September 13, 2011

U.K. Survey: 'Fluctuating' HIV Symptoms Affect Work Ability and Daily Living

“Fluctuating” symptoms are common among people living with HIV and have the potential to disrupt day-to-day living, including the ability to work, according to a survey conducted by the United Kingdom’s National AIDS Trust (NAT) and reported by aidsmap. The variation and unpredictability of the symptoms, which include fatigue, insomnia, depression, diarrhea and neuropathy, tend to be as much of a problem as the symptoms themselves.

Much like the U.S. Social Security Administration’s recent efforts to better understand disability and the need for income benefits among people living with HIV amid today’s antiretroviral therapy options, the United Kingdom’s Work Capability Assessment and its Employment and Support Allowance (ESA) benefits are also under review, notably for their inflexibility when it comes to accommodating diseases associated with fluctuating symptoms.

The NAT survey involved 265 people living with HIV, all of whom completed an online questionnaire about various HIV-related symptoms during the previous six months.

It is not surprising, the aidsmap report notes, that in a study inviting people to self-report, the majority of the respondents had at least one of the symptoms on the list. The most common was fatigue (57 percent), followed by depression or anxiety (55 percent), gut-related problems (48 percent), insomnia (46 percent) and neuropathy (33 percent). “More significant,” the aidsmap report adds, “was the fact that more people experienced these symptoms as fluctuating rather than constant.”

Roughly 40 percent of the respondents were unemployed. In many cases, the symptoms were significantly affecting respondents’ ability or willingness to work.

In other cases however it was clear that fluctuating symptoms—as compared with constant symptoms—were significantly affecting people’s ability or willingness to work. One question on the study asked, “On how many occasions in the past four weeks have your symptoms significantly affected your ability to work?”

A quarter of people with fatigue, 20 percent of those with neuropathy and about 15 percent of those with depression and gastrointestinal problems reported that, during the previous four weeks, their symptoms significantly affected their ability to work.

NAT recommends that more research needs to be undertaken into these common, fluctuating symptoms and that HIV organizations—at least in the United Kingdom—should raise awareness among employers, and among HIV-positive people themselves, about the importance of making reasonable adjustments at work to enable people living with HIV to continue their employment.

In terms of the ESA benefits, NAT recommends that qualifying evaluations take into account “the full range of barriers fluctuating symptoms present to participation in work and other daily activities,” including their unpredictability and the fact that they come in combination.

“Assessment should consider the impact of fluctuation and the cumulative impact of multiple, lower-level symptoms on people living with HIV,” they comment.

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Previous Comments:

Mico, DC, 2011-10-18 08:39:25
The worse was the neuropathy, caused by the meds and it began two years after I started. It didn't get better and all the meds couldn't stop it. The bad are doctors who just give another pill without wanting to say, it affects work performance. It got worse, but I adjusted, then the days of feeling wiped out, just no energy and I had to take a day off on average once a week. Then the insane sleep patterns. I finally had to quit work. It still bothers me. But, I'm alive.

Bertram, Vancouver, canada, 2011-10-06 21:44:39
26 years positive. Sudden onset of acute fatigue knocks me out for 24hrs at a time. Neropathy in my feet and hands in controlled by morphine for the past 12 years. Now takeing 120mg throughout the day. Part-time work, on my terms only. Life is still good! I love my life. Even the days when I simply cannot get dressed, I make the most of every day. I love to garden, I am planting tons of bulbs for next spring. Clean liveing, n.s/n.d, helps to keep me mentaly healthy. Good friends are important.

Will, Lake CIty,Florida, 2011-09-29 03:59:27
I think that even your doctors should recognize the problems patients have in these areas.I have been poz since 2001 and have daily pain out of my neuropathy,gut,and I also suffer from depression,Reguardless of our counts these difficulties due to either the meds or infection itself is not in our imagination.I have been out of work and disabled since 2005 from every symtom mentioned in this article. Thanks

Beau, Phoenix, 2011-09-14 21:52:18
I tested positive in 1988 and had to retire from work in 1999. I have had these symptoms every single day for over twenty years. Now I have Parkinson's disease for the last seven years which only makes everything worse. The worst is fatigue followed by gut because of the 22 different medications I take every days, some multiple times a days. Thanks

Luis, miami, 2011-09-14 19:39:47
every single one of those symptoms in this article I have felt for the last 6 years. too bad that this condition is not considered a disability by the ada.

David Martinez Penaranda, England, 2011-09-14 12:40:57
Im HIV + and i recognised the symptoms described on here. I have pressure on my spinal cord and i need surgery. I have fatigue and stomag problems very often. Im only 35 and i have been so for the past few years. I have anxiety and stress. Thanks

momcandie, Jacksonville, 2011-09-14 12:00:29
These "fluctuating symptoms" are effecting school children too. My son is really struggling this year will them.