Yes, Long COVID survivors are still out here. And we need your compassion

By: Rachel Nicole Madison

March 15, 2025 | Originally published in the Austin American Statesman | Op-Ed

Saturday marks International Long COVID Awareness Day, a day of recognition dedicated to spreading awareness about an all-too-often dismissed and ignored chronic illness.

This disease, known in the medical community as post COVID-19 condition or post-acute sequelae of COVID-19, is characterized by an onset of over 200 potential symptoms in the weeks and months after an acute COVID-19 infection. The World Health Organization estimates that at least 5% of all COVID patients will go on to develop some form of Long COVID. Worldwide, it has changed the lives of 65 million people.

I would know — I am one of them.

At age 22, my world came crashing down as I succumbed to a wave of crippling symptoms that took me from a healthy, able-bodied young woman to someone with moderate disability over the course of several weeks. I suffered from extreme fatigue, shortness of breath, large fluctuations in my heart rate, severe nausea, weight loss, panic attacks, brain fog and exercise intolerance. Even doing something as simple as walking to another room, taking a shower or doing some computer work could worsen my symptoms and leave me wiped out in bed for days.

Forced to abandon all social, professional and personal aspects of my life, I spent months in bed with no treatment, public assistance or medication to ease the symptoms my body experienced daily. Two years in, I’m still healing from the physical and emotional impacts of this illness, and I will continue to cope with it for years to come.

My experience is not unique.

“Imagine waking up with a virus and finding your entire life altered for years afterward. Everything — work, relationships, simple daily tasks — becomes an uphill battle,” said Cindy Kohler, a long hauler in Austin and cofounder of the support organization the Long COVID Collective.

Despite its surging prevalence, many people have never heard of Long COVID. Due to a combination of public ignorance, political controversy and lack of medical research funding, most people who say they have Long COVID are met with a blank stare.

For a long hauler, societal misunderstanding and lack of awareness can feel like a final punch in the longest match of their life.

“When I had cancer, I was called a fighter and a survivor. But with Long COVID, it’s the opposite,” said Kohler. “Suddenly, I’m met with skepticism or dismissal.” This disbelief can be devastating to Long COVID patients, as the disease is already associated with neurological inflammation, which can exacerbate anxiety, depression and post-traumatic stress disorder conditions.

Pair this with medical ignorance, social isolation, and neglect and the mental health risks to this community surge.

“People with Long COVID deserve understanding, and more importantly, they deserve the support that every chronic illness patient should have,” said Kohler.

Five years in, COVID-19 is likely here to stay, and the Long COVID community will inevitably continue to grow as cases spread each year. We cannot escape the reality of this illness by pretending it does not exist. Nor can we eradicate it through wishful ignorance. We must face it head-on through education and awareness.

So, if you are among the fortunate who walked away from your COVID infection unscathed, consider taking the time to educate yourself about the experiences of those who didn’t. On this day of international awareness, I urge you to read about, volunteer with or donate to organizations that are committed to supporting this community. Talk with your family, friends or doctors about this illness and how it presents so that you can be ready to assist when the disease finds its way into your life. Be willing to learn about the ways this has affected people’s lives and continue to protect yourself and others.

You can make this world a better place today through educating yourself and becoming an ally. As the long haulers would remind you: Each day is a gift. Do not take it for granted.

Review the original publication at: https://www.statesman.com/story/opinion/columns/your-voice/2025/03/14/long-covid-survivors-need-your-support-compassion-opinion/82055504007/