Recently, someone whose family member has Long COVID asked me if I could describe my own experience—what it’s really like to live with an infection-induced chronic condition.

It’s both an easy and a very hard question. As the saying goes: if you’ve met one person with Long COVID, you’ve met one person with Long COVID. Everyone’s symptoms are unique, but there are common threads that run through people’s stories: fatigue, brain fog, changes in mood, and “crashes” after even minimal too much activity or stimulation.

What Those Symptoms Actually Feel Like

The words don’t always capture the reality:

• Fatigue isn’t just being tired—it’s a complete lack of energy, the kind that makes even basic tasks feel out of reach.
  
• Pain isn’t a sore muscle—it’s bone-aching pain that makes you feel 30, 40, even 50 years older than you are.
  
• Brain fog isn’t being a bit forgetful—it’s not being able to bring thoughts together, it’s feeling overwhelmed by a simple conversation with people you love, it’s your brain not being reliable.
  
• Changes in mood aren’t about being grumpy or sad or angry—they’re about not feeling like yourself as you move through your day. They are about your body sending distress signals to your brain to withdraw, be wary or defend yourself; and about the chemical mix or the way signals move in your brain being different, further limiting your drive and enjoyment of everyday things.
  

These are not surface-level symptoms like a swollen ankle. They run deep, affecting how you experience and interact with the world, how confident you feel about doing things you value, and whether you commit to plans or even spend time with the people you care about—because of the risk of making symptoms worse.

My Experience

In the spring of 2020, my Long COVID symptoms included fatigue, breathing difficulties, headaches, heart rate variability, anxiety, exercise intolerance, disrupted sleep, and brain fog. I even noticed my pupils were constantly dilated—signaling that my nervous system was stuck in fight-or-flight.

With my second COVID infection, the brain fog, headaches, pain, and fatigue became debilitating. I had always relied on my brain and clear communication in both work and personal life. Suddenly, juggling tasks was impossible. At times, it took all my focus just to pick up a glass or carry something in from the car—and if someone was talking to me at the same time, I had no chance.

Work changed, too. Where I once presented from rough notes, trusting the big ideas to come together, I now had to write down every single word just to get my points across. I was bone-wearily exhausted all the time, and sleep didn’t leave me feeling rested in the morning. I doubted my own abilities, became reluctant to commit to things—and often I was right to, because I simply couldn’t do them anymore.

That’s not just hard physically—it’s a blow to your sense of self. It also changes how others see you, even people who love you and want to support you. Sometimes they step back, unsure how to help, or because you can’t do the things you used to enjoy together.

Why It’s Hard to Understand

The hardest thing for family and friends to grasp is that feeling better isn’t about willpower, positivity, or wanting it enough. Regardless of how badly your conscious brain wants to be better, the symptoms remain. Your body and brain feel like they’re failing you.

The game-changer for me was realizing that these symptoms were the result of physical changes—including to the nervous system. This wasn’t something I could “think” my way out of. Recovery started when I began trying small, body-based actions to support my nervous system. When those helped, I looked for more.

Helping Family See What Helps

Sometimes the gap is just about understanding what’s connected. For example, my husband always had the radio on in the kitchen. When my symptoms were at their worst, that background noise was too much—I couldn’t filter it out while managing tasks or listening to my toddler. Once we realized turning it off reduced my symptoms, everyone was happy to do it. But at first, none of us understood how such a small thing could be linked to my health. So it can be powerful to understand the full range of symptoms and share them openly with others - even if that list feels like a long one!   

Even with empathy, it’s hard for a family to fully grasp what it feels like. Honestly, even now that I feel better, I sometimes struggle to comprehend just how bad I was.

The best way forward is to acknowledge this difficulty, learn together about how different body systems can be affected, and give family and friends simple, practical ways to help—so they not only see improvements, but also get more of “you” back.

Warmly,
Katie 

Related Blog posts: 

Living With Someone Who Has Long COVID  

The Tyranny of Stairs  

Finding Joy While Managing Symptoms During the Holidays

How to Choose What Truly Helps with Long COVID Recovery