Personal Support Systems

Insight

Supportive family and friends make or break the experience of a person with Long COVID. Often, however, they are absent.

• Supportive caregivers often help with daily activities and responsibilities, provide emotional support and strength, and assist with care coordination. These actions can in turn help reduce psychological distress for a person with Long COVID. However, the role can come with a tremendous mental, emotional, logistical, and financial burden.
• Painful divisions can occur between friends, family members, and even partners when there are misunderstandings about the nature of Long COVID, misconceptions about “what healthy looks like,” and caregiver burnout.
• Children with Long COVID whose parents or guardians do not understand or believe in Long COVID, or do not have the capacity to seek support, are in an especially dangerous position, missing out on necessary health care and school accommodations. Additionally, children do not have established support networks or systems to rely on, like many adults may have.
• Some children whose parents or guardians have Long COVID experience an abrupt shift in their role and responsibilities, taking on caregiving and financial responsibilities they did not have before. Paired with the emotional strain of seeing a parent struggle, these stressors can negatively impact a child’s mental health, cause a decline in their grades and marginalization within their social circles, and make them rethink or give up on future goals for themselves.
• Some people with Long COVID experience ongoing shame and marginalization resulting from the manner in which they got COVID or Long COVID, including those with long-term side effects from vaccines.