Are you living with HIV and looking for resources on dealing with chronic symptoms?
You know your body best, and you deserve care that honors you. We hope that these info sheets will help you validate your experience, identify, and manage chronic symptoms.
PLHIV are more likely to live with chronic fatigue, pain, brain fog, memory issues, and more. These symptoms can be worsened after a COVID infection. Too often these symptoms are dismissed and providers don’t offer effective treatments, leaving managing them up to each individual.
Worried that a COVID infection might make your symptoms worse?
Like HIV, SARS-CoV-2 infections can lead to many chronic conditions. Studies show that PLHIV may have a higher risk of severe illness from SARS-CoV-2 infection and developing Long COVID.
About this toolkit: Each info sheet was developed by chronically ill and disabled community members and reviewed by medical professionals. They are part of a larger toolkit called Long COVID Essentials, which offers many other resources that are helpful for people living with complex chronic conditions like Long COVID, HIV, and ME/CFS.
Info sheets
People with HIV may be more at risk of Long COVID. Here’s what we know.
People living with HIV – especially those with untreated or advanced infection – may face a higher risk of both severe COVID-19 and developing Long COVID, likely due to immune system compromise, chronic inflammation, comorbidities, and structural inequities such as limited healthcare access.
Learn more about risk factors and ways to protect yourself in this helpful guide.
Getting Long COVID care when you are living with HIV
People living with HIV may face challenges in receiving Long COVID care, ranging from providers’ lack of awareness to experiencing medical stigma. Thus, it is advised to start by discussing symptoms with your HIV provider, clearly distinguishing them from pre-COVID issues, and advocating for referrals to informed Long COVID or chronic illness specialists if needed.
Check out this resource for tips to help you advocate for yourself, navigate discussions about COVID-19 and Long COVID with HIV providers, and deal with medical trauma.
Tracking your symptoms
Tracking your (Long COVID) symptoms, whether through a daily log, app, or simple scale, helps you understand your health baseline, identify triggers (like post-exertional malaise), and provide detailed insights to medical providers about how symptoms fluctuate over time.
“Brain fog,” memory problems, and other neurological issues after COVID-19
Long COVID commonly causes cognitive issues such as memory lapses, difficulty concentrating, executive function struggles, brain fog, as well as neurological symptoms like tingling, numbness, internal tremors, headaches, balance problems, and altered senses of taste or smell.
While no approved treatments exist, symptom management strategies such as pacing activities, seeking a diagnosis for overlapping conditions (like dysautonomia or ME/ CFS), and working with occupational or speech therapists may help improve daily functioning.
What is Myalgic Encephalomyelitis (ME/CFS)?
Myalgic encephalomyelitis (ME) is a severe, multi-system chronic illness that is often triggered by infection, environmental stressors, or trauma that causes profound fatigue, cognitive impairment, sensory sensitivities, and a hallmark symptom called post-exertional malaise (PEM), where symptoms worsen significantly after even minor physical or mental activity. There is no cure, and managing ME often involves pacing to avoid triggering relapses. Many individuals with Long COVID meet the diagnostic criteria for ME.
The HIV Complexities Toolkit for PLHIV is part of the HIV Complexities Project, which includes an online support group and an online community gathering on October 16 from 6:30-8:00 pm (free to join, learn more here!)