About Long COVID – FAQs and Helpful Links
If you have questions about Long COVID, you’re not alone. Our leaders and media in Canada have largely been silent on the issue, but Long COVID is not rare and it’s important to be informed. For anyone looking to learn more, including health care professionals and those newly living with illness, this post is a peek into the world of post infectious illness. Here, I share my answers to Long COVID FAQs and links to helpful external resources. I hope some of the knowledge and experience I’ve gained over the past year can help you on your way.
Why is it called Long COVID?
How did you become infected with COVID-19?
What were your initial/acute symptoms?
What are your symptoms, now?
How long do symptoms persist?
Have you had any treatments or interventions?
What tests have you had?
Are you vaccinated?
Do kids get Long COVID?
What’s the hardest part of living with Long COVID?
Will you be able to work again?
What do you think about a pension specifically for front line workers that were infected?
How do you spend your time these days?
Do you get out of the house?
What helps you to cope?
What do you wish people knew?
Since your illness is often invisible, is it frustrating to explain the impact of COVID on your life?
What is the best way to support someone living with long Covid?
What is your best advice for someone newly infected with COVID-19?
What are some resources you recommend?
1. Why is it called Long COVID?
Long COVID is a name created by those living with it (attributed to Elisa Perego; history of the name here). It is also known as Post Covid Conditions or Post Acute Sequelae of COVID-19 (PASC). Long COVID avoids the stigmatization of words like “chronic”, “syndrome”, and “conditions” and does not assume an understanding of the pathophysiology as being “post” infectious. The term was established well ahead of institutional bodies of medicine and research recognizing the illness. Some of the earliest research into Long COVID was done by those living with it. Check out this Long COVID Physio video explaining what’s behind the name.
2. How did you become infected with COVID-19?
I wrote a blog post explaining this to commemorate nine months of illness in October 2021.
3. What were your initial/acute symptoms?
Severe headache was the first sign. Chills, body pain, and fever followed 1-2 days after headache onset. Nasal congestion continued for a week or two.
4. What are your symptoms, now?
This is a complicated question since there are so many. Patient Led Research Collaborative did one of the earliest studies on Long COVID and showed that >200 symptoms exist! I personally have a list of 30 different symptoms that span every body system. They fluctuate in severity but none have fully resolved. They weren’t all present immediately following acute infection, but emerged at different times over the past year. Some of my most disabling symptoms include cognitive impairment & fatiguability, Post Exertional Symptom Exacerbation/Malaise (PESE/PEM), profound fatigue & activity intolerance, orthostatic intolerance & dysautonomia (postural orthostatic tachycardia syndrome – POTS). Though not disabling for me, I find menstrual changes, decreased proprioception/balance, and heart palpitations can be quite distressing, as well.
In addition to POTS, I meet criteria for Myalgic Encephaloymyelitis (M.E.) diagnosis. If you work with patients with Long COVID, learning about M.E. is essential. In fact, M.E. communities and researchers are the origins of many of our strategies for managing Long COVID (ie. PESE/PEM is the hallmark symptom of M.E.)
5. How long do symptoms persist?
I’m not aware of an official consensus on when acute COVID becomes Long COVID. It seems to vary slightly by region. The CDC notes four or more weeks from symptom onset. In October 2021, the World Health Organization released a clinical case definition stating it occurs “…usually 3 months from the onset of COVID-19…” But while these resources describe the onset of Long COVID, there is no end date. Some people fully recover within a few months (often termed “natural recovery” in post infectious illness communities & research). Many people have some improvement in symptoms and abilities over months to years, but this does not mean they are “fully recovered”. [Sidenote: Did you know that most (all?) public health data groups Long COVID into their “recovered” numbers?] A large number of people with Long COVID may not experience complete recovery and may even worsen over time. Looking at Myalgic Encephalomyelitis can help with our expectations since it is a very similar post infectious illness (perhaps the same illness in a cohort of us) that many with Long COVID go on to develop and which has no cure at this time. It is also important to note that periods of remission exist in both illnesses. Long COVID and M.E. can be described as relapsing-remitting illness; episodic disability; and dynamic disability.
6. Have you had any treatments or interventions?
Sort of, but not really. Pacing is my key intervention but I don’t consider it a treatment. Pacing is a strategy for illness management and symptom stabilization. I have also implemented my own modified POTS exercise protocol (within the limits of PESE/PEM. Exercise can harm us!) to address my autonomic dysfunction. I’ve increased water and salt intake and plan to try compression stockings. I’ve tried dietary adjustments such as decreasing sugar and gluten. However, I thankfully do not appear to have MCAS (mast cell activation syndrome) or dietary sensitivities other than alcohol, caffeine, and a lower threshold for sugar. I have tried taking a daily probiotic, vitamin C & D, and co-enzyme Q10 supplement. I also tried daily aspirin in consultation with my GP in light of new evidence and research on micro-clots in Long COVID (Dr. Resia Pretorius and Dr. Baete Jaeger are researchers to watch, along with patient-partner Dr. Asad Khan.) I doubt aspirin is powerful enough to deal with the havoc wreaked on my body, but it’s an easy, low-risk medication to try after one year with no treatments.
Update: since finally being diagnosed with POTS in February 2022, I am now on a vasopressor called Midodrine.*
Important to note here is that quite literally all of my care has been initiated and/or guided by me. In fact, I spend a lot of energy teaching and sharing resources with my healthcare provider(s). Many of us are more knowledgeable than our providers, and it’s always true that the patient is the expert on their own body and experience. The sooner that medical culture can shift to recognize the skills and knowledge that patients have, the better. And while it’s ok to be on a journey of learning together, it’s important to know how exhausting and demoralizing it is to constantly know more or be more up-to-date on research than your healthcare team.
*This is not medical advice. Please make sure you discuss treatment strategies with your doctor.
7. What tests have you had?
Blood work, ECG, Echocardiogram, 24hr Holter monitor, Treadmill stress test. My tests are largely “normal”, which only means we aren’t using the right tests for our population. As Dr. Resia Pretorius has said, “Just because we have not yet identified a biomarker for Long COVID, does not mean biomarkers do not exist. We just need to look harder.” Similarly, just because our typical gamut of tests aren’t finding something, doesn’t mean there is nothing to find. We are clearly very sick. We need our providers to look harder and think outside the box.
8. Are you vaccinated?
Fully vaccinated and boosted. I was infected literally days before I was booked to get my first vaccine dose. The best way to avoid Long COVID is to avoid COVID altogether. Get your vaccine. Wear high-grade masks (eg. N95, KN95, KN94). Limit your contacts. Avoid unnecessary travel. No one thinks Long COVID can happen to them, until it does…
9. Do kids get Long COVID?
It pains me to tell you this, but yes they do. Political and public health messaging around this has been very misleading. When leaders say kids can’t get COVID or Long COVID, they are absolutely incorrect – whether misinformed, in denial, or shamefully lying. Kids do get COVID and Long COVID. I am less familiar with paediatric areas of research, so I encourage you to go looking. Some studies in adults have shown upwards of 40-50% of COVID-19 infections have prolonged symptoms. So even if prevalance is slightly less in kids, that is still a huge number of people. There are support groups specifically for kids and families with Long COVID: Long COVID Kids Canada Long COVID Kids UK
Related to the horrible messaging around risk to children is describing any variant as “mild”. When leaders say a variant is “less severe” they mean less likely to cause death. Death is not the only severe outcome, though. Calling any variant of this illness “mild” when Long COVID is a possible outcome erases disabled and chronic illness experiences. Brushing off deaths of disabled and chronically ill people is eugenics and disregards the risks and deaths of immunocompromised children, too. A large part of our populations have co-morbidities (even if it were a small percentage, it’s still eugenics!) According to the CDC, comorbidities include things like pregnancy, asthma, and diabetes. We all know someone with comorbidities. It is not okay to rationalize their risks and deaths.
10. What’s the hardest part of living with Long COVID?
1. Accessing appropriate healthcare. This requires constant self-advocacy on top of being severely ill. I am very privileged and have a lot of knowledge and skills from my years of working in healthcare systems. If I am struggling, then every person with Long COVID is struggling.
2. Social isolation and changing relationships. I won’t explain in depth, here, but relationships are lost and/or changed through all of this and that is painful. This is no doubt exacerbated by the pandemic fatigue and trauma that everyone is experiencing.
3. Unpredictability and fluctuations of the illness. I can pace, plan, prioritize. I can monitor my heart rate. I can adapt activities for myself. I can do all the “right” things but sometimes I will still relapse/crash. It’s not all within my control. This illness requires letting go, surrendering, and living in the moment, as well as a steep learning curve while figuring out your body and illness!
4. Loss and Grief. It’s normal and healthy, and still hard to grieve loss of function, loss of work, purpose & productivity, loss of independence, and loss of dreams. This illness demands change in all areas of life.
11. Will you be able to work again?
I hope so but I’m not sure. My attempts at return to work have proven unsuccessful so far. As time goes on, the likelihood of returning to my full-time, Neuro position at the hospital is fading. I hope I’m wrong. Some things that could help me be successful at returning to work once I’m well enough, include: flexibility (eg. work hours, project deadlines, work setting); adaptive equipment, such as a power wheelchair; and some of these amazing Stickman Communications products to alert colleagues to my status.
12. What do you think about a pension specifically for front line workers that were infected?
YES! But I doubt this will ever occur. People are losing jobs and careers, losing homes, and are dying. There are very few supports. I am a “lucky” one with my case accepted as a workplace injury. My experience is very privileged and I am not the norm. There are so many people suffering and falling through the gaping holes in our systems. This is a mass disabling event that cannot be ignored forever. When a large portion of the global population becomes ill and disabled and cannot “contribute” to our capitalist society, something will have to give.
13. How do you spend your time these days?
Rest. Learning how to truly rest means considering cognitive, social, emotional, and physical exertions. It looks like meditation, laying in bed, sitting outside and watching the birds. Structured, scheduled rest breaks in my day are necessary. Which brings me to planning. I plan my day and prioritize my top 1-2 things for that day. I always have a running To Do list, but the list does not dictate my day – my symptoms do. REST – PACE – PLAN. That is my way of life.
Some activities I can do daily (unless in a crash), include: watching TV; reading or audiobook; washing a few dishes; making the bed. Other activities that are more sporadic or require modifications: showering (you didn’t misread. I wash dishes more often than I shower. Showers take a lot of energy, so I manage 2-3/week at most); laundry; clean a sink or toilet; cooking or baking; virtual meetings; knitting; an outdoor hang-out; going for a walk around the block (sometimes even 2 blocks!).
14. Do you get out of the house?
Occasionally, but not often. I rarely drive – it’s not worth the energy. My spouse does all the shopping (and most of the household things.) When I go out, it’s for things like medical appointments, an outdoor visit with friends/family, or for a change of scenery. A wheelchair would help me get out more – especially a power chair so I could have some independence! To use some well-known rehab terms: I am an ambulatory/part time wheelchair user (once I have a wheelchair.) I am mostly a household ambulator. My disability is dynamic, episodic, fluctuating, relapsing-remitting, energy-limiting. I can walk, but not long enough to adequately access the community. I can walk, but it’s not always possible to spend my energy on walking.
15. What helps you to cope?
Spousal support. A few close friends & family. Gratitude and noting improvements. Going outside. Creating routine and structure where I can. Dreaming new dreams. Staying present and not giving too much power to fear & unknowns. Psychology – I have an excellent, young, female psychologist who creates a safe space for me to be heard and to process grief & change. New community and friendships with others with Long COVID, Myalgic Encephalomyelitis, and other illnesses. New knowledge – I hope I make it back to work eventually so I can use it even more.
16. What do you wish people knew?
Long COVID isn’t rare. It’s more debilitating than you realize. This is our generation’s Polio. Our systems do not actually take care of people (you may already know this one.) There are other illnesses that have been systematically maligned that you need to know about: Myalgic Encephalomyelitis is one. For example, it has a significantly higher disease burden compared with MS or Parkinson’s disease, yet the funding in comparison is horrendous. The degree to which uncommon or misunderstood illness presentations are wrongly psychologized is scandalous and abhorrent. Did you know MS was psychologized before the invention of the MRI showed plaques? Do you know the history of medical maltreatment of women and “hysteria”?
17. Since your illness is often invisible, is it frustrating to explain the impact of COVID on your life?
Sometimes. But I’m strategic and careful with how I spend my energy. Not everyone is entitled to details. How I feel in the moment might dictate what I share. Being isolated at home means I haven’t encountered too many people disbelieving me or insisting that I “look” fine – what is disability and illness supposed to “look” like, anyway? I’ll admit questions like “Are you feeling better yet?” can be tough (I wrote a recent blog post on this!) It’s been transformative to learn more on how we view illness & disability (see: ableism). Demystifying Disability by Emily Ladau is an enlightening read and accessible to a wide audience. We could also do better at making space for grief, loss, and pain. Too often we try to paint over it with “good vibes”. But again, this is exacerbated by our collective pandemic fatigue, trauma, and grief.
18. What is the best way to support someone living with long Covid
Check in with them! Acknowledge them in some way. Don’t assume what they need or what they can or can’t do – ASK instead. You don’t need to offer advice or well wishes. You don’t have to talk about illness or hard things. Something as simple as a text that says, “I thought of you” goes much further than you may think. If you’re up for it, consider some concrete ways you can offer support. For example, “Would it help if I brought you some food?” “Would it help if I raked your leaves?” “Do you need a ride to an appointment?” If you can’t offer support, I guarantee sending a generic text or email will be appreciated. Send a funny joke. Update them on your own life. Text a cute meme. Send a photo of your dog. Basically – just reach out in some way. People who are isolated, ill & disabled really need community. I mean, we all need community, don’t we?
19. What is your best advice for someone newly infected with COVID-19?
REST. Rest more than you think you need to. When symptoms begin to subside, return to activities very very gradually. Remember that rest includes cognitive, emotional, social, and physical. If possible, do not return to work after 5 days – most people need longer. The acute and subacute stages are an absolutely essential time for rest. It’s possible that pushing yourself in this initial phase can put you at greater risk for developing long term illness.
20. What are some resources you recommend?
Definitely a non-exhaustive, but a couple that initially come to mind are:
*thank you to the friends and family that submitted questions for this piece!