Fighting an Epidemic of Caregiver Burnout from Invisible Illnesses like ME/CFS and Long COVID

About a month ago, we captured a precious moment in a family photo where my husband and I are smiling and relaxed at a restaurant. But what the photo doesn’t show is that when we got home, my husband was so exhausted from the outing that he crashed and stayed in bed for the next two days, totally drained and in pain. Just from going out to lunch.

My husband has an “invisible” chronic illness called Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS). It causes deep, unrelenting fatigue that is worsened by physical or mental exertion. It also often causes a range of other debilitating symptoms such as brain fog, sleep problems, chronic pain, migraines, dizziness, irregular heartbeat, shortness of breath, digestive issues, sensitivities to noise, light, and smells, food allergies, muscle weakness, and many other issues.

There is no cure yet for the 17–24 million people who have ME/CFS. Most are unable to work. Some people are 100% bedbound. The super severe lie in bed in the dark and can barely talk.

Currently more than 65 million people with Long COVID suffer from the same range of symptoms as ME/CFS. Many medical researchers believe they’re the same illness triggered by different viruses. Of those reporting they have Long COVID, 79% say they have limitations to their day-to-day activities and 27% characterize the limitations as significant, according to a January 2023 survey conducted by the U.S. Census Bureau and National Center for Health Statistics.

Since ME/CFS, Long COVID, and other “invisible” chronic illnesses like fibromyalgia and Lyme disease can be extremely debilitating, family members often become caregivers for their loved ones who can’t function on their own.

Unfortunately, a second wave of suffering arises when caregivers feel overwhelmed and exhausted. There are several factors why this happens:

1. It’s tough to find all the necessary info & resources to be effective caregivers.

• It’s hard to find doctors who can treat these debilitating chronic illnesses that aren’t well understood.
• There’s no centralized place to find what we need to know about all the different aspects of caregiving (healthcare, emotional, financial, legal, etc).
• These illnesses are complex and involve multiple systems in the body.
• There is no cure, and there’s a huge range of treatments to explore to address symptoms. Some treatments work for some people but don’t work for others, and we don’t know why.

2. Caregivers have trouble with self-care and face burnout.

• We need to take on new roles as caregivers and patient advocates, usually with no training. For example, we need to learn about the intricacies of working with health insurance companies, multiple specialty doctors’ offices, pharmacy rules, and more. Many of us need to learn about disability (e.g. applying for disability benefits, buying a wheelchair, and retrofitting a house).
• We often take on the emotional & mental burden of finding answers on behalf of our loved one who is too sick to do much on their own.
• In some cases, we need to take on more household responsibilities that were once shared with the family member who’s now too sick to cover these chores.
• We typically feel that we need to be the emotionally strong ones since we’re the healthy ones in our families.

3. We’re lonely and isolated.

• It’s hard for others to truly understand. Sometimes friends and family aren’t sensitive to the extreme lifestyle changes we’re forced to make. In some cases, relatives question the validity of the illness and friends disappear.
• There’s grief for the loss of the life you had imagined for your loved one, yourself, and your entire family.
• There’s also grief when you’re unable to do what you’d like to do because of caregiving responsibilities or required lifestyle changes.

To help address these issues, in 2019 I founded a support group for ME/CFS partner caregivers, a spinoff of a support group for all caregivers of loved ones with ME/CFS hosted by #MEAction volunteers. Recently, caregivers of people with Long COVID are also joining our monthly video conference meetups. Participants say they look forward to our meetings, where they feel heard, understood, and supported by fellow caregivers. They feel less isolated and get actionable advice from others who face the same challenges. “It’s a bright spot for my entire month,” one caregiver said at our last meeting.

To extend the reach and impact of the monthly support group, I plan to launch Caregiver Wisdom, an online venture that focuses on the needs of caregivers of people with debilitating chronic illnesses. Along with other family caregivers, we will offer expert advice, trustworthy resources & services, and community connection.

We’re in a silent epidemic of invisible chronic illnesses, and caregivers are caught up in the devastation. Millions of people around the world are suffering from ME/CFS or Long COVID, and numbers continue to rise. Millions more suffer from other “invisible” debilitating chronic illnesses like fibromyalgia and Lyme disease. These numbers are mind-boggling and the human suffering is immense.

Along with the patients who suffer are the family caregivers who love and support them. With Caregiver Wisdom, we’re launching a movement to prevent another epidemic — an epidemic of caregiver burnout. By empowering caregivers with expert advice, trustworthy resources and services, and community connection, they’ll be able to live their best lives and thus lift up their entire families who depend on them.

If you would like to support this effort, please contact me at kim.mecfs@gmail.com.