Avoiding Caregiver Burnout: Wisdom for the ME and Long COVID Community

I recently helped my husband answer more than 500 questions for a new doctor about his health symptoms. He has myalgic encephalomyelitis (ME), Postural Orthostatic Tachycardia Syndrome (POTS), chronic pain, fibromyalgia, migraines, and other related illnesses. I braced myself for the length of the paperwork. But what hit me hardest was an intense wave of grief.

After 20 years as his care partner, I’ve gotten used to his reduced capacity. Yet seeing his struggles documented in black and white — the intense fatigue, severe pain, cognitive challenges, emotional difficulties, and more — hit hard.

Medical visits often trigger deep grief when I realize just how long our journey has been and how excruciating it must be both physically and emotionally for him. I blink back tears to hide them because I don't want him to feel worse.

Right behind that intense grief comes ambiguous loss — a complex type of grief. It’s the grief of missing someone who’s still alive, or mourning a life that’s still unfolding — but in a very different way from how you imagined. 

As caregivers, we grieve in quiet, complicated ways. We grieve our loved one’s suffering. We grieve the relationship we used to have. The dreams we shared. The plans that no longer make sense. We even grieve who we were before caregiving changed everything.

When hundreds of millions live with ME, Long COVID, POTS, fibromyalgia, chronic Lyme, and other complex chronic illnesses, that means their families suffer too. A 2021 study of 1,418 family caregivers for people with ME and chronic fatigue syndrome (CFS) found that 93% reported experiencing sadness, and 73% struggled to talk about their thoughts.

Many caregivers spend so much time caring for their loved ones that they neglect themselves and burn out. Having experienced burnout myself, I encourage all caregivers to take intentional actions to strengthen their resilience. Over the years, I’ve learned invaluable mindset, emotional, physical, and spiritual strategies to strengthen my resilience so that when challenges arise, I can stay calm and grounded. This resilience enables us to cope and be the best caregivers possible and even allows us to thrive.  My story

When I first met my husband, he told me about his illness on our very first date. He’d gotten seriously sick in college, and it took years to get a diagnosis and find treatment. By the time we started dating, he had learned to manage his symptoms with careful pacing. We could even go salsa dancing — just not for as many songs as I would’ve liked. It was the first of many lifestyle compromises.

Three years later we got married, built up our careers, had two sons, and bought our first house. Life was full, and we were happy. Then his health started declining again, slowly but steadily. About 10 years ago, he had to leave the career he loved. 

Back then, I didn’t know where to turn. When my mom had Alzheimer’s, I could find books, support groups, and guidance. But there were almost no resources for ME caregivers.

In those early years, I felt so alone. And there were unique challenges: Explaining an invisible, misunderstood illness to family and friends. Hearing dismissive comments like “Yeah, I’m tired too.” Struggling to find knowledgeable doctors, as these conditions are rarely taught in medical schools. And coordinating care with more than a dozen specialists is exhausting, even for someone without an energy-limiting illness.

I was used to solving problems with hard work. But this was different. It was grueling and deeply isolating. About seven years ago, I came across #MEAction’s caregiver support group and later launched a spin-off group for ME partner caregivers. I loved connecting with others like me and felt less alone. After COVID-19 hit, caregivers of loved ones with Long COVID and other infection-associated illnesses began joining our meetings. Today, our group meets on Zoom the first Sunday of the month. Either I or a fellow caregiver gives a short presentation on a caregiving topic, and then we meet in small breakout rooms to connect with other caregivers on a more personal level.   

After a corporate reorganization eliminated my job in 2022, I chose to leave my 30-year journalism and marketing career to follow a different path. I launched Caregiver Wisdom, which focuses on community, coaching, and content for family caregivers. Current offerings include a weekly email newsletter, a monthly support group, group coaching programs, one-on-one coaching, blog posts, and more. While I can’t cure these conditions, I can contribute to our community by sharing the caregiving lessons I’ve learned. It’s taken years of research, therapy, coaching, and Zen practice — but I’ve gathered tools that have made a real difference in my life. And now I teach them to others.  Here are a few of the most important things I’ve learned:

1. Invest in your own self-care.

   
   

   It’s easy to let self-care slide. I did it for years, thinking I didn’t have time. But I’ve learned the hard way that when I don’t take care of myself, I become the least patient, most depleted version of me. And that doesn’t help anyone.

   
   

   Self-care doesn’t need to take a lot of time or money. Small acts matter: deep breathing, stretching, a short walk outside. I always encourage caregivers to start their mornings with 10 minutes of something nourishing. It helps set the tone for the rest of the day.

   
   

   The more you tend to yourself, the more you build resilience — and the more capacity you have to care for others without losing yourself in the process.

2. Join a support group.

   
   

   Caregiving can be incredibly isolating. Many of us stop reaching out to friends because we’re too exhausted — or too tired of not being understood. Support groups create space for connection, validation, shared wisdom, and even laughter. There’s something powerful about being in community with people who get it.

   
   

   I still lead the free monthly ME/Long COVID partner caregiver support group (Note: any type of caregiver is welcome). There are also other fantastic support groups and online communities for caregivers, including ones for parents of adult children, teens, and kids.

   
   

3. Adopt a non-attachment mindset.

   
   

   Accept that everything is constantly changing. So don’t be attached to how things used to be or how you expect them to be. Attaching to what you can’t have causes suffering. Instead, accept change and adapt to new circumstances. This lesson from my Zen teachers has helped me immensely.

   
   

   I recently planned a family vacation to Japan, not knowing if my husband’s health would be stable enough for him to go. It took months of painstaking research, logistics, and advocacy. Of course, I wanted him to come with us. But I also didn’t want him to crash and face worsened symptoms. And if I got too attached to the outcome I wanted, I might be bitterly disappointed. Instead, I focused on accepting the reality of the situation: hoping he could join while mentally preparing myself to enjoy the trip with just our sons, if needed.

4. Understand ambiguous loss and embrace radical acceptance.

   
   

   In caregiving, ambiguous loss manifests as a profound sense of grief despite your loved one still being alive. In chronic illness, the ongoing and sometimes unpredictable nature of ME is like a roller coaster ride, oscillating between hope and despair.

   
   

   It’s important both to grieve the life that illness has taken away and enjoy the life that still continues. Radical acceptance is letting go of the need to control, judge, and wish things were different than they are. By choosing to radically accept things out of our control, we prevent ourselves from getting stuck in unhappiness, bitterness, anger, and sadness.

   
   

5. Navigating changing relationships.

   
   

   As humans, we’re constantly changing. This makes it even more important to be present with yourself and your loved ones. Learn effective interpersonal communication skills, which often aren’t taught in school, such as the DEARMAN skill and Nonviolent Communication practices. And remember conflict is part of every relationship. Pick your battles! It can be tough, but don’t let caregiving overshadow your relationship with your loved one. And realize that your relationships with others may change due to your changing life circumstances as a caregiver. This usually means identifying what’s most important to you at any given time, setting boundaries with others, and even setting boundaries with yourself.
   

Most importantly, remember that while things may be difficult, you can still experience beauty, connection, and love. Being a chronic illness caregiver has been a personal development journey for me. I’m stronger for it, and now I love helping others. (While we touch on the above topics in the free monthly support groups I lead, we go into greater depth in the "Thrive as a Caregiver" paid group course program I now offer.) Along with the 400+ million people with Long COVID and the millions more who’ve had ME since before the pandemic hit, are the family caregivers who love and support them. Please join me in preventing another crisis — an epidemic of caregiver burnout. We need to empower caregivers to be able to live their best lives, and thus lift up their entire families. Note: This article first appeared in The Sick Times, a journalist-founded website chronicling the Long COVID crisis.