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Stigma and empty wallets make HIV positive people carry on despite pain

Up to three quarters of people living with HIV suffer from pain. The Conversation Africa spoke to Antonia Wadley about research that measured activity and resilience among people living with HIV and pain.

How is HIV-related pain different from other types of chronic pain?

People living with HIV experience pain similar to people with other chronic conditions. For example, people with HIV can have similar nerve pain in the feet and legs as diabetics. The significance of our study is that HIV-positive patients react to their pain differently.

Many people with moderate to severe chronic pain find it difficult to move around. But we found that, in contrast, HIV-positive people who had chronic pain were still active.

There were two parts to our study: we measured activity and resilience (or a person’s ability to cope with adversity). We wanted to see if HIV-positive people with pain moved less than those without pain and if resilience affected how much they moved. We also wanted to know if resilience affected how much pain they felt.

We measured activity by getting participants to wear movement detectors over two weeks. It helped us understand how much patients with chronic pain moved and how much time they spent being active each day. The overarching finding was that activity levels did not drop as pain increased.

In previous studies, women who suffered from rheumatoid arthritis spent large parts of each day not moving. And similarly, women who experienced really bad period pain moved much less when they were menstruating.

But people living with HIV and chronic pain did not stop their usual activities, despite the pain they experienced.

To measure resilience we used a questionnaire developed by pain researchers in the US. Researchers from Europe have used this questionnaire to assess resilience in patients experiencing chronic spinal pain. They found that people who were more resilient coped better with chronic pain and were more active.

Our assumption was that the more resilient patients were, the more active they would be. This assumption proved to be incorrect. Resilience made no difference to activity levels. We also assumed that resilience would lead to participants experiencing less pain. But that wasn’t the case either. Patients who were more resilient did not have less pain.

What type of pain do people living with HIV experience? How common is it?

One in every two people with HIV experience pain. This includes headaches, chest pain, back pain or frequently peripheral nerve pain in their feet and hands.

The pain can be moderate to severe and can be caused by the immune system’s response to the virus or can co-occur with it. The pain does not tend to go away when patients go onto antiretroviral drugs. Some drugs have been shown to inadvertently induce pain. While the pain can be short-lived, it can also become chronic.

So what factors did play a role in activity levels and why?

There were two reasons why HIV-positive people with pain may have continued to be active: financial stresses and stigma.

We found that younger participants, unemployed participants and those who worried most about getting food were the ones who were more active. It seems they relegated their pain to a lower priority.

Our study also showed that stigma often stopped people from talking about their pain and may have motivated them to keep active.

We asked the participants with pain who they spoke to about their pain. Nearly half of the patients had not told their closest friends and some had not disclosed this to their family. They said they feared that talking about their pain might reveal their HIV status.

Why are these findings important and what’s next?

The HIV-positive patients who were more resilient were more satisfied with their health.

HIV-related pain is really difficult to treat. Improving resilience, for example with psychological treatments, may be one way of improving patients’ satisfaction with their health even if their pain stays the same.

With other kinds of chronic pain, people who keep active do better. But sometimes, pushing through pain can actually make pain intensity and disability worse. In this study we looked at how pain affects activity in HIV. Now we need to look at how activity affects pain.

We know that for patients with other kinds of pain, social support is really important to help them cope. HIV-positive patients may go without social support if they conceal their pain. We need to understand how they cope instead.

The impact of HIV stigma on pain also needs to be investigated.

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