Long COVID can be difficult to explain.
Not just because it affects different people in different ways, but because symptoms can change from one day to the next.
You might manage something today and be unable to repeat it tomorrow.
You might feel relatively okay immediately after an activity, only to crash two or three days later.
And sometimes you can spend an entire day resting and still feel as though you’ve completely exhausted your energy supply.
In this episode of 3Spoonies, we were joined by Amy Butterworth, also known as LongCovidRockstar, and Emma Brackenbury to talk honestly about what living with Long COVID can really look like. Find out about them here.
Alongside Karen’s own experience with Long COVID, the conversation explored symptoms, healthcare, work, pacing, identity and the enormous adjustment involved when your body suddenly stops behaving in the way you’ve always expected it to.
What Does Long COVID Feel Like?
There isn’t one universal Long COVID experience.
Amy described it as being like a hangover from a party you never agreed to attend.
Emma compared it to a merry-go-round, where one collection of symptoms may disappear only for another set to arrive.
That unpredictability is one of the hardest parts.
Symptoms discussed throughout the episode included:
- Severe fatigue
- Pain and aching
- Brain fog
- Breathlessness
- Palpitations
- Loss or changes to smell and taste
- Mobility difficulties
- Heavy limbs
- Problems with concentration
- Post-exertional malaise
- Fluctuating energy levels
Even among people with the same diagnosis, the impact can be completely different.
When Rest Isn’t Enough
One of the biggest misconceptions around Long COVID is that recovery works in the same way as recovering from many other illnesses.
Rest for a while.
Start moving again.
Build your strength gradually.
Get back to normal.
For some people with Long COVID, that approach can make things considerably worse.
A major part of the episode focused on post-exertional malaise, often shortened to PEM.
PEM means that symptoms can become significantly worse after physical, cognitive, emotional or social exertion.
And importantly, the crash isn’t always immediate.
You might do something on Monday.
Feel surprisingly okay on Tuesday.
And then be completely wiped out on Wednesday.
That delay makes it incredibly difficult to recognise your limits.
Physical Energy Isn’t The Only Energy
Another important part of the discussion was recognising that exertion isn’t only physical.
Thinking uses energy.
Working uses energy.
Concentrating uses energy.
Socialising uses energy.
Stress uses energy.
Even strong emotions can contribute to a crash.
Amy talked about noticing a strange relationship between using her brain and using her legs. A mentally demanding day could leave her physically unable to do as much afterwards.
This is something people without energy-limiting conditions may struggle to understand.
You don’t necessarily have to run a marathon to use up your available energy.
Sometimes answering emails, concentrating on a conversation or simply getting dressed can be enough.
Learning To Pace
Pacing came up repeatedly throughout the episode.
At its simplest, pacing means learning how much energy you have available and trying to work within it.
But that doesn’t mean everyone approaches pacing in exactly the same way.
For Amy, it has involved deliberately doing less than she thinks she can manage.
For Emma, it sometimes means choosing to do something she knows will cause a crash because the experience itself brings enough joy and meaning to make the recovery worthwhile.
That’s an important distinction.
Living with chronic illness isn’t always about doing everything perfectly.
Sometimes it’s about making informed choices.
If something matters deeply to you, you may decide that the consequences are worth it.
The difference is being able to plan for those consequences rather than being blindsided by them.
“But You Look Better”
Invisible illness creates another challenge.
People see you when you’re out.
They see you when you’re working.
They see you recording a podcast.
They see the social media photo.
They don’t necessarily see the preparation beforehand.
Or the days spent recovering afterwards.
This is why comments like:
“You look so much better!”
can be complicated.
They’re usually meant kindly.
But being able to do something once doesn’t mean someone has recovered.
It doesn’t mean they can now do that thing every day.
And it doesn’t show the cost of doing it.
Recovery from Long COVID is not necessarily linear.
A good day isn’t proof that the illness has disappeared.
When The Tests Say You’re Fine
Another frustrating theme was the experience of going through medical tests while knowing something is clearly wrong.
Blood tests come back normal.
Results are within acceptable ranges.
Nothing obvious appears.
And yet you still can’t function as you did before.
Amy discussed receiving support with symptom management and pacing while still feeling frustrated that there weren’t clear answers about what was actually happening inside her body.
Emma spoke about being ill early in the pandemic, when healthcare professionals were only beginning to realise that some people weren’t recovering from COVID.
Karen’s journey to accessing a Long COVID clinic was also a long one, complicated by other health conditions, deficiencies, lockdowns and the need to rule out different possibilities.
Healthcare understanding has improved.
But there are still many unanswered questions.
Losing Work Means Losing More Than Income
Long COVID can also completely change someone’s relationship with work.
Amy had been highly active before becoming ill and found herself suddenly unable to return reliably to her job.
Emma had worked in the film industry, where long hours and intense workloads were part of everyday life.
Eventually, she had to consider a difficult question:
If this is my body now, what can my life look like?
That led to building something new around what she could realistically manage.
But losing the ability to work in the way you once did isn’t simply a financial change.
Work is often tied to identity.
People describe themselves through what they do:
Teacher.
Business owner.
Creative.
Manager.
Professional.
Expert.
When illness removes that role, there can be a genuine grieving process.
Who Are You When Productivity Disappears?
One of the most powerful themes in this episode was learning to separate personal value from productivity.
If you’ve always been the person who gets things done, saying “I can’t” can feel like failure.
If you’ve always helped other people, putting yourself first can feel selfish.
If you’ve always measured a good day by how much you achieved, resting can feel like doing nothing.
But chronic illness forces different measurements.
Sometimes success means attending an event.
Sometimes it means sending one email.
Sometimes it means getting dressed.
Sometimes it means recognising that today isn’t the day and going back to bed.
Your value doesn’t disappear because your productivity changes.
But learning to genuinely believe that can take time.
Finding Joy Within New Limits
This episode wasn’t only about loss.
It was also about adaptation.
Emma found a way to continue using her creativity through corsetry retreats, supported by someone else handling the administrative work she struggles with.
Amy has focused heavily on the psychological side of adjusting to chronic illness, including self-compassion and changing how she measures her own worth.
And throughout the discussion, we talked about finding ways to keep doing the things that make life feel meaningful.
Not necessarily in the same way as before.
Not necessarily as often.
But in ways that work with the body you have now.
Final Thoughts
Long COVID isn’t simply “being tired after COVID.”
It can affect energy, cognition, mobility, breathing, employment, relationships, independence and identity.
And perhaps one of the hardest things about it is unpredictability.
There isn’t always a clear roadmap.
There isn’t always a straightforward treatment.
And there isn’t necessarily a neat path from illness to recovery.
For many people, living with Long COVID means learning to listen to their body, manage energy differently and reconsider what a successful life looks like.
That adjustment can involve grief.
It can involve anger.
It can involve frustration.
But it can also involve creativity, community and finding new ways to build a life that still contains meaning.
You can find out more about Amy and Emma here.
Listen or watch this episode of 3Spoonies: On Long COVID here.
We’d love to hear from you:
If you live with Long COVID, what do you wish more people understood about it?