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RA Anxieties: Isolation & Misunderstanding

Editor's note: In this series, we discuss causes of anxiety for those facing physical health conditions like rheumatoid arthritis (RA). Phrases in quotes are the words of our community members across various conditions on what it’s like to deal with these anxieties.

It is hard for people to understand what it’s really like to live with symptoms or side effects of a health condition. Often, they more easily understand physical symptoms than emotional and mental ones. For example, comments along the lines of “You don’t look sick” or “It’s not that bad” are common and frustrating.

RA has invisible symptoms

People may assume that having no physical symptoms means you are carefree. Yet for many conditions, even when those symptoms are subdued, the anxiety around recurrence, flares, and checkups remains. You know from experience how quickly health can change. As one community member said, “I fear the next big flare . . . This cannot last forever.”

Doctor-patient relationships matter

Commenters described not being believed or taken seriously by their doctors, even being called a hypochondriac. Some doctors value certain symptoms and side effects over others. This is particularly common with pain versus mental health challenges. The doctor’s test results tell only part of the story, and the doctor is not always able or willing to hear the rest.

A needle bursts words like alone, ignorance and believed

Social support and RA

One complicated and anxiety-producing reality is social isolation. In an effort to be supportive, friends and acquaintances might try to avoid “pressuring” you by not extending invitations to events. “Not [being] invited to things” and “feeling closed in” are a reality for many with RA. Some friends might not understand your discomfort and assume you are no longer invested in the friendship.

Battling RA fatigue

Social occasions can dwindle because of your need to cancel or change plans based on your physical and mental well-being on any given day. Many people living with chronic illness discussed fears like “having an attack in public,” needing to staying home, and “sleeping my life away.” Some said they really discovered “who their real friends are” – the ones who make an effort to understand and appreciate their needs.

Find your RA support group

It’s important to find other people who understand the particular challenges you are 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 having open, honest conversations. A statement like “My anxiety is bad today – can we reschedule?” deserves as much respect as reporting physical symptoms.

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