Dealing with Long Covid: Lessons Learned from Post-Concussive Syndrome

I’m writing this partially as a self-reflection and in hopes that something I say here helps someone else. I’m currently navigating the post-acute Covid strangeness and I realized that I’m better able to cope with it because of what I’ve gone through previously with post-concussive syndrome.

I’m currently over five weeks out from starting to feel unwell. Although I had a negative test, I had all the symptoms (loss of taste/smell, fever, dry cough, shortness of breath, etc.) and after two weeks of the quarantine, I was shocked that I couldn’t even walk around the block. Previously working out 5x a week, I’m still struggling with daily headaches, fatigue, and breathlessness.

This piece is in no means medical advice. Currently, the available research on long Covid is sparse with clinical guidelines being released recently.

My Post-Concussive Experience

One early November morning in 2012, I was driving on a two lane expressway when it just began snowing. While trying to switch lanes, my rear tire hit a patch of ice and the car began to fishtail. I don’t remember what happened except the clear memory of my head smacking backwards against the headrest. I had just started a new job and didn’t have health insurance so I turned the ambulance away at the scene of the accident. As the car was totaled, we rented another from a local airport and headed home — myself propped up on blankets in the backseat crying from the pain. After calling my parents and learning that my car insurance could cover medical costs, I was loaded up on painkillers, given a neck brace, and told to take it easy.

As a gymrat at the time, I didn’t rest enough and within a week tried to go back to the gym. My first session back, my whole right side went numb and I thought I was having a stroke, resulting in a trip to the ER. This was actually my fourth concussion and apparently my brain had had enough. What followed in the months and years afterwards were a battery of medical tests (MRIs, CTs, EEGs), physical therapy, chiropractor appointments, disability accommodations, and therapy sessions. Over eight years later, I still have some lingering effects and can’t drive in a car if it’s raining or snowing hard.

Listen to your body

First and foremost, don’t do what I did and try to push yourself at the same level as what you were at before. Slow down, take it easy, practice ‘aggressive resting’, and listen to your body. One of your worst enemies will be a co-infection with ‘used-to-itis.’ It is hard to acclimate to a different level of physical and mental functioning than you are used to. I think this can often be harder to deal with cognitively and emotionally much more difficult to manage than an acute-infection. Learning how to manage the uncertainty of how long symptoms will last for, when you will return to ‘normal’, and potentially what you can do to help yourself are big challenges. So please…

Try to take things one day at a time

Generally speaking, I like to think of the future and plan a far bit ahead. This was one of the hardest things to grapple with for me as I wanted to be back to ‘normal’ immediately so I could improve upon where I was before — not my current reality. This mindset for me ended up being incredibly disheartening and discouraging. Progress is not always linear and you may have good and bad days. You’re essentially in rehab and that’s okay. Be nice to yourself and allow yourself to cry when you need to and reflect upon what you’ve been through physically and how it makes you feel. Perhaps progress physically may stall but you’ve learned how to adapt in different ways. That is progress too! Just because you can’t be physically active in the same exact way as before, doesn’t mean that you’re broken. Emotional progress in terms of resilience, seeking support from others by being open and vulnerable, and finding new coping mechanisms is a type of progress too! That being said…

Be mindful of your coping mechanisms

People cope in different ways but there are some that are pretty clearly unproductive and sometimes even dangerous. When I went back to school, I teetered on the edge of an opioid addiction. Luckily I found that when I increased yoga and chiropractor sessions and sought disability accommodations in school, my pain was more manageable and used these healthier coping mechanisms more. If you find yourself ruminating over things in circles or you’re so mentally crushed and drained that you’re unable to do anything, it might be worth seeking out a therapist as well. Anxiety and depression are common in long haulers.

Tell people around you and unfortunately prepare yourself for some unkind people

Having supportive and understanding people around you will help immensely however, some people will be dismissive or really don’t know how to be supportive. If the latter is true, being honest and direct with them can be extremely helpful, especially if your friendship/relationship may be affected by your new symptoms (e.g., fatigue). There are lots of long-covid groups formed online (primarily Facebook) so this might be a place of reassurance as well. Just keep in mind that everyone has their own unique recovery pathway and try not to compare to others, especially if you are feeling stuck. In addition to getting help from friends and family, it’s also important to…

Find a doctor who cares

Not all doctors are known for their bedside manner and not all are well-versed in what you’re dealing with. This is especially true of long covid as it’s a new condition with evolving research. Find someone who won’t tell you ‘it’s all in your head’ or doesn’t understand false-negative tests. You may have to fight and be a tough advocate for your care. You know your body best. Hopefully you will find someone who is understanding and will do their due diligence to get you the tests and care that you need.

Epidemiologist specialized in meta-research. American in Europe. Photographer and Embroiderer on the side.

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