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Living With HIV

Written by Beth Schneider
Posted on April 24, 2024

In a recent survey of myHIVteam members, respondents discussed the impact HIV can have on their mental health, especially feeling stigmatized or judged. Challenges related to living with HIV include finding a caring doctor and affording medications. Members also shared the self-care steps they take to manage HIV.

Who Took the Survey?

We conducted a survey with 193 members of myHIVteam in the United States who are living with HIV.

The survey asked members about:

  • The social and emotional impact of HIV on their lives
  • The ease of finding a caring doctor, access to treatment, and testing facilities
  • Their self-care practices

We share the results of myHIVteam member surveys so our community can learn, collectively, from each other’s experiences.

Nearly Two-Thirds of Survey Respondents Feel Stigmatized

HIV can take an emotional toll. Approximately 2 out of 3 survey respondents said they feel stigmatized (64 percent), and nearly half reported feeling alone or unsupported (49 percent). One myHIVteam member shared, “I am fighting the loneliness and rejection.” Another said, “I feel the discrimination and the stigma of being HIV.”

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About Half of Survey Respondents Have Easy Access to HIV Treatment and Information

Around half of those who took the survey feel they have easy access to testing or treatment (55 percent), or they can easily find reliable information about HIV (54 percent). A lower number have found it easy to find a caring doctor (40 percent), and only 35 percent feel treatment is affordable.

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Nearly All Reported Being Able To Stay on HIV Treatment

Most survey respondents reported being able to stay on their medications (95 percent) and having open discussions with their doctor (75 percent). More than half also limit alcohol or drug use (60 percent) and sleep seven or more hours a night (56 percent).

Other self-care habits were more difficult to keep up with, including maintaining a healthy weight (40 percent) and exercising regularly (36 percent).

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Talk With Others Who Understand

On myHIVteam, a social network for people living with HIV, more than 41,000 members come together to ask questions, give advice, and share their stories with others who understand what it’s like to live with HIV.
How does HIV impact you? What advice do you have for others? Describe your experience in the comments below, or start a conversation by posting on your Activities page.

Posted on April 24, 2024

A myHIVteam Member

I've been seeing my Dr. For 13 years, it came to a problem on my last visit, I've been complaining about the burning and numbness in my feet, Mt leg feels paralysis, and my balance is extremely off… read more

posted May 31
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Beth Schneider has been a market research professional for over 35 years. She focuses on both survey research and social listening analysis. Learn more about her here.

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