HIV Anxieties: Isolation & Misunderstanding

In this series, we discuss causes of anxiety for those facing chronic health conditions like HIV. Phrases in quotes are the words of our community members across various conditions on what it’s like to deal with these anxieties.

It’s hard for people to understand what it’s really like to live with symptoms or side effects of a health condition or illness. Physical symptoms are easier to understand than the emotional and mental ones. For example, comments of “you don’t look sick” or “it’s not that bad” are common and frustrating.

You seem fine

It’s easy for people to assume that having no physical symptoms means you’re carefree. Yet for many conditions, even when those symptoms are subdued, the lingering anxiety of recurrence, missteps, and checkups remain. You know from experience all too well how quickly health can change.

Doctor knows best?

Commenters described not being believed by their doctors, being judged by their healthcare providers, or “doctors not treating me with respect.” Some doctors value certain symptoms and side effects over others. This is particularly common with pain or mental health challenges. The doc’s test results only tell part of the story, and they aren’t always able or willing to hear the rest.

Social isolation

One complicated and anxiety-producing reality is social isolation. In an effort to be supportive, friends and acquaintances might avoid “pressuring” you by inviting you out and about. Folks mentioned “not [being] invited to things” and “feeling closed in.” They might not understand your discomfort and assume you’re no longer invested in the friendship, especially when going through bouts of depression or anxiety.

Testing friendships

Social occasions can dwindle because of your need to cancel or change plans depending on your physical and mental wellbeing on any given day. Many of those who answered our prompt discussed fears like “having an attack in public,” staying home, and “sleeping my life away.” Some folks said they really discovered “who their real friends are” – the ones who make an effort to understand and appreciate your needs.

Seeking support

It’s important to find other people who understand the particular challenges you’re facing. Support groups and online spaces are one way to find a community. The following are a few tips for communicating how you’re feeling to others:

• Bring loved ones or friends (trusted ones only!) to caregiver-friendly support groups or other events like fundraisers. You might want to check in with your support group first to get the okay.
• Share articles and personal stories with friends and loved ones. This can be easier than having to explain in your own words.
• Consider sharing some of the gritty details. Part of battling the stigma is open, honest conversations. “My anxiety’s bad today, can we reschedule?” deserves as much respect as feeling physically ill.