Understanding Long COVID through lived experience
Long COVID is real, life altering, and often misunderstood. People living with Long COVID experience fatigue, brain fog, breathlessness, and Post Exertional Malaise PEM every day, yet others may not see it. For those of us living with it, we sometimes encounter blank stares, dubious looks, or well meaning but incorrect advice. Here is what Long COVID is not, busting common myths with a bit of humour to lighten the load.
1. Long COVID Isn’t Just in Your Head
One of the most frustrating myths is that Long COVID is all in the mind. I have had that conversation more times than I care to count. Nobody wakes up one day thinking, “You know what is missing in my life? Some random fatigue, heart palpitations and dizzy spells.”
This is not a mood or a passing feeling. It is a condition with physical symptoms that dominate our lives.
Yes, Long COVID can impact mental health, but that does not mean it starts there. Brain fog, crushing fatigue, and dizziness are not dramatic flair. They are your body telling you, “Still fighting over here.” It is not all in the mind. It is the virus overstaying its unwelcome.
2. It Is Not Just Stress or Anxiety
Here is one we hear too often: “Maybe it is just stress.” Spoiler alert: it is not. Long COVID is not caused by stress or anxiety. Sure, living with it is stressful, and it can trigger anxiety, but these are effects of the condition, not the root cause.
Having Long COVID feels like running on ten percent battery while juggling one hundred tasks. Telling me to just relax is like telling a car with an empty tank to just drive slower. Nice idea, but it will not get me any further.
3. Long COVID Isn’t Laziness or Lack of Effort
Let us bust this myth straight away. Having Long COVID does not mean you are lazy. It is not about being just tired either. This is exhaustion on a level that defies explanation, where even getting out of bed feels monumental.
It is not the fatigue a nap or a coffee can fix. Before COVID I was active, busy, and always on the go. Now, if I am lying down a lot, it is not because I am lazy. It is because my body demands a time out. If it were possible to push through, we would already be at the finish line. Sheer determination is not the cure. Otherwise we would all be gold medallists in perseverance by now.
4. It Is Not the Same as a Little Post Virus Fatigue
Does not everyone feel a bit tired after being ill? Sure. But Long COVID is completely different. Regular post virus fatigue usually resolves in days or weeks. Long COVID can last months or even years.
This is not the Oh I stayed up too late last night tiredness. It is body wide exhaustion, muscle pain, and symptoms that flare unpredictably. Standing up can feel like a Herculean task, and migraines, chest tightness, and dizziness often tag along.
5. It Is Not the Flu or a Cold
Oh I had the flu once. I totally get it. Spoiler: they do not. Long COVID symptoms go far beyond a runny nose.
Long COVID is like someone pressed the malfunction button on your entire system. One minute you are standing. The next, you are negotiating with your own heartbeat to calm down because it is racing for no reason.
And it is unpredictable. One day I feel semi human. The next, it is like my body hit the reset button on its energy supply. Consistency? Never heard of it.
Some people develop conditions like POTS, where just standing up sends your heart rate soaring, or issues with temperature and digestion. Unlike a cold, Long COVID does not simply clear up. It is more like your body is stuck in safe mode and cannot fully restart.
6. A Positive Attitude Cannot Fix It
A good mindset can help manage Long COVID, but it is not a cure. Suggesting we stay positive or think happy thoughts will not make the virus leave.
We are all for optimism, but hope is not a treatment plan. Long COVID does not respond to affirmations. It is a physical condition, not a motivational challenge.
7. It Is Not as Simple as Just Get More Exercise
Another persistent myth is that exercise will fix everything. For many of us, exertion makes symptoms worse, thanks to something called Post Exertional Malaise PEM. Even light activity can leave some people wiped out for days or weeks.
This is not about being unfit or unwilling. It is about self preservation. Yoga class might sound lovely, but for some of us, it is an invitation to a flare up. Long COVID does not play fair when it comes to physical activity. Move if you can, based on your personal circumstances.
8. It Is Not Just Allergies
Some of us develop allergy like reactions, where foods, perfumes, or fabrics suddenly trigger flare ups. But this is not the same as being a bit fussy or sensitive. It is more like your body decided to turn against its usual favourites.
Finding snacks or products that do not provoke a rebellion can feel like solving a Rubik’s Cube in the dark. Suggestions for safe treats are always welcome.
Setting the Record Straight
Living with Long COVID means navigating a sea of misunderstandings. It is not just in our heads, it is not just stress, and it is definitely not something a power nap can fix.
Here is to more conversations, more compassion, and less unsolicited advice.
Disclaimer
This article is based on personal experience and is not medical advice. Always consult a qualified healthcare provider for guidance tailored to your individual health needs. If you experience severe Post Exertional Malaise PEM, do not push yourself beyond your current capabilities until you have a stable baseline.
Related topics
Fatigue and Energy Management · Long COVID The Real Invisible Challenge · Brain Fog and Cognition · Post Exertional Malaise Tips
Long Covid Journey 