It’s easy to think the pandemic is becoming a thing of the past as the reopening phases we longed for are instated and vaccinations allow us to be social again. For all of us, there will be lasting effects of living through a pandemic and bearing the mental and physical toll it took. Sure, we’ll tell future generations of the time the world shut down and we’ll say how wild it was. But for some, their story will be a tale of true survivorship.

This is a story of stories from people who are long-COVID warriors.

What does long-COVID look like?

Like many chronic illnesses, long-COVID isn’t fully understood. People with long-COVID (aka COVID long-haulers) bear the burden of showing the world the virus isn’t a one-and-done situation. Far from. What some experienced as mild sickness over the course of a few days, long-haulers experience as a daily battle with lasting COVID symptoms: unrelenting fever, frightening shortness of breath, brain fog so intense it diminishes cognitive ability, and debilitating fatigue, to name a few.

So, yes, life may seem like it’s going back to normal again, and that is worth celebrating. But it would behoove us to learn from those who are still carrying the weight of the pandemic in their bodies. There is a lot of wisdom here. We, a collection of people who lived through 2020, need to listen.

In a series of patient spotlights, Aila Health, a platform designed for personalized health care for people with chronic illness, amplified the voices of COVID long-haulers. Listening to their stories was equally humbling and empowering.  

Impact of living with this “invisible disability”

As we hear more and more disinformation about the COVID-19 vaccines and how it’s fueling a worry train about long-term effects of the vaccine, the long-term effects of having long-COVID are lost. When you get to hear the stories of long-haulers, it’s a humbling reminder that we have far more to deal with right now—here, in the present—than worrying about things that haven’t happened. I’m looking at you, vaccine disinformation. There is no evidence or scientific proof that the vaccine has negative long-term effects. But there is proof that COVID-19 does. And it comes from people who know it too well.

One common theme of COVID long-hauler stories I heard was the frustration of having doctors dismiss long-hauler symptoms. When test after test came back normal, doctors began to say things like you just need to calm down when a long-hauler shared concern about their consistently racing heart, or it’s probably just anxiety.Long-haulers talked about days of not being able to get out of bed from severe fatigue, of needing to move back in with parents so their partner could work and their parents could be caretakers. As much as support from family and friends was a common theme and point of gratitude among long-haulers, many expressed a lack of empathy from others not understanding or not believing that yes, it feels that bad, and no, it’s not in my head.

Many mentioned the mental health battle, of dark thoughts and dark days, of times lying on the floor or in the closet crying because of the overwhelming burden of being chronically ill with a condition that was rarely believed to be a thing. Then there’s the toll of having to answer well-meaning friends and family’s “Are you getting better?” with “No, not yet.” One long-hauler noted how that can play into a feeling of failure, juxtaposing their reality of lingering, debilitating symptoms with others’ misunderstanding that COVID is a fleeting illness and that it’s something you just get over. Sometimes, but not always.

There is no shortage of dialogue on the impact of long-COVID on quality of life. Not being able to work a full-time job because of the brain fog and fatigue that, at the end of a workday, makes putting one sentence together an insurmountable effort. Taking “incompletes” in courses that couldn’t be attended (virtually) because of debilitating GI issues and daily migraines. Needing to constantly moderate energy expenditure or consciously think about breathing each breath.

Being the first to have a new illness is a burden to bear. Yet, as shown in the stories of long-COVID warriors, there lies a chance for new resilience.

How do COVID long-haulers manage?

When there is a paucity of research and resources, the best we can do is learn from each other. Here are some tips from COVID long-haulers on managing not only the symptoms but also the impact on daily life. These are tried and true, and their value was earned by the warriors themselves.

• Energy management/energy budgeting: 10-minute brain breaks every 50 minutes to manage fatigue
• Get outside: the “old-fashioned remedies” of getting sun and fresh air are oldies but goodies
• Creativity: writing and journaling is cathartic and gives space to share experience
• Support: join support groups of long-haulers (i.e., on social media) and work on communication with family and friends to get the support you need; “second your own advocacy”
• Nutrition: dietary changes and supplements to help reduce inflammation in body
• Hydration: “dehydration is your enemy”
• Educate: self-education to learn more about long-COVID and to educate immediate communities through research and shared stories
• Keep it real: being positive isn’t always helpful—ask doctors for the worst-case scenario so you can plan and “say the truth of what you need, the truth of how bad you feel to your doctor” because they’re learning too
• Counseling: to sort through those times when “you were afraid to go to the doctor because you knew you were just going to be brushed off” and gain tools for managing unhelpful thoughts

Words of wisdom from long-COVID warriors

With hardship comes wisdom. Long-haulers shared tips and advice that speak to all humans but is especially powerful for those who get it. You know who you are.

• “It’s not in your head, you’re not crazy; this is real, and it’s going on.”
• “Find a doctor that listens to you and believes you and…tries to understand or educates themselves or learns alongside you.”
• “It’s real important to reach out to support communities and be able to…help each other through this because nobody understands like a fellow COVID warrior…it’s okay to reach out for help.”
• “The more you educate yourself, the more you advocate for yourself, the better off you’re going to be.”
• “Do not give up. You don’t know if your symptoms will improve, or they find something…all is not lost.”
• “Listen to yourself; trust your intuition; listen to your body. Listen to those whispers when you know something is coming on and pull back hard. Don’t wait until your body is screaming at you.”
• “Please listen to the patients and believe them and ask how you can best support them.”

These are the tales worth spreading: stories of strength, of pulling through and not allowing oneself to be dismissed, of educating and inspiring. Long-COVID warriors have things to say. Listen.

If you are a COVID long-hauler or know someone who is, support awaits. You are not alone, and there is a way forward. Aila Health has a community of long-haulers who know how it is and a free app where you can track all of your health information in one place, gain insights into your health data, and connect with other long-haulers in forums and live group sessions.

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