I am sharing my story of how I developed and recovered from long covid:
Discovering the real cause for chronic symptoms
Recent research tells us that about 40% of people who see a physician for pain or other symptoms have no organ disease or structural damage that explains their illness.
So what causes these debilitating symptoms? Stress.
Not stress, like a busy time at work.
The kind of disabling symptoms I was experiencing are usually tied to chronic stress, trauma and childhood adversity.
Over time, your mind and body learn that certain triggers like work, socializing and exercise are dangerous. Often trauma survivors have have learned to push through and ignore your body’s quieter warning signals. So you keep going.
So your nervous system starts to ramp up the warnings. It makes you so tired you have no choice but take a sick day. Or you get a debilitating migraine so you don’t have to go to that party. Or you need to run toilet so often you cannot go on that run.
You are not sick. You are not broken. This is your nervous system doing its best to protect you.
The pain is real. The fatigue is real. The dizziness and ringing in your ears is real. But these symptoms are created by your mind, not by structural organ damage.
It was hard for me understand how these debilitating symptoms could be “protective” until I heard a psychologist explain that your nervous system’s job is not to give you an fun, meaningful life. It is to keep you alive in the face of danger.
Luckily, you can learn ways to feel safe again. You can bring in play, joy, peace and meaning back into life.
You can recover.
Mind Body Medicine
This model of understanding chronic pain and symptoms is called mind body medicine.
Mind body medicine has been developed by doctors and mental health therapists. The methods have been researched at universities such as Harvard and the University of Colorado.
I used a number of books, podcasts, videos and recovery programs to learn about mind body medicine. I compiled some of my favourite resources on a blog post about mind body medicine, if you’d like to learn more.
If you want a quick and very affordable recommendation, check out the app Curable. You can also read more at the Association for the Treatment of Neuroplastic Symptoms.
Body focused meditations
One of the recovery tools that worked best for me were short meditations where I learned to pay attention to my body in a calm, neutral way without getting into any stories about what happened in the past or would happen in the future.
I listened to short guided meditations almost every day for a long time. These meditations encouraged me to observe my body sensations (including unpleasant ones) while I was relaxed. With time, I learned to be with my body and not be afraid of symptoms. Not just stopping fear-based thoughts, but genuinely feeling relaxed and safe in my body.
With practice, I also learned to recognize when a physical sensation meant I was feeling emotions. Although I have not had chronic symptoms for years, I am still learning working on this. For example, I only recently learned what I often think is fatigue is actually often sadness. So if I made a little space to feel sad, usually don’t feel fatigued.
Why I previously had no emotional awareness
Like many people who experience childhood adversity, I learned to suppress my needs, wants and emotions. Instead I focus on the adults around me and tried to keep them happy and safe.
Parents are supposed to give children a safe space to learn about themselves and express themselves.
Children also feel emotions deeply and do not know what to do with them. They cannot self-regulate. They need adults to co-regulate with them. This is how children learn to feel emotions and soothe themselves as adults.
My parents did their best. While they were able to provide for all my physical needs and wants, they struggled when it came to emotional needs.
They focused more on my academic accomplishments and being their version of a “good” (Catholic) person. But being interested in who I was, listening to me, supporting me, valuing me for who I was, and loving me without conditions — this not something that came easily to them.
And neither really was fun, rest or play for the sake of it. Constant hard work drove everything.
Impact of a parent with mental illness
One of the reasons my childhood was like this was that was that my mother was mentally ill for most of my life.
Almost as long as I can remember, she spent most of her time in bed with what I was later told was depression.
In her 40s, she received some treatments that helped her get out of bed. But she became was cruel and controlling. She had difficulty understanding that I was a separate person from her.
I understand now that this behaviour may have been part of the early onset dementia she has now been diagnosed with. Now in her 70s, with much more advanced dementia, she is mostly happy, curious, kind. She often remembers things that are important to me, such as my current pronouns and name.
To me, this is a sad story. Sad for me. But also sad for her. I am sure she did not this either.
My father at times tried to fill in the gaps. But he was taking care of his ill wife, three young kids and was the primary breadwinner with a demanding job and a long commute. And he has his own stuff going on.
Gender trouble
Starting at a young age, my mother had an obsession with me being pretty and appealing to the right sort of future husband. She mean this in a helpful way, but for a queer, trans kid … this was anything but helpful.
I remember my mother telling me when I was about seven years old that I would not get a good a husband if I ate my pancakes like that. (I was eating like a happy little kid, enthusiastically with my hands, drenched in syrup.) I did not even know why I would want a husband, seeing I was in first grade.
I never had that trans kid story where I “always knew I was a boy.” I just liked what I liked. But I always knew I did not want to wear girly clothes. Whenever it was time to force me into a dress and tights, I screamed. I cried. I hid. I never got my way.
As a teenager, this turned into an obsession over how I dressed and even who I dated. She made break up with one guy because he did not meet her husband criteria for me, even though he was ever so gentle, kind, thoughtful and fun.
First experience of chronic illness
When I was 15, I was sexually assaulted multiple times by someone I went to school with.
I knew the adults in my life would not be helpful. I knew I would not be believed, I would not get help or I might even be blamed. I tried to ask my friends for help, but they did not know what to do. I don’t blame them. We were all children.
Immediately after, I got mono (glandular fever). This is a infection caused by the Epstein Barr Virus (EBV). Now almost everyone has had mono, even if you don’t know you caught it. I had to miss the last weeks of school and a good part of my summer on bed rest due to extreme fatigue.
I now can make the connection between stress of the sexual assault, the lack of support and the lasting fatigue.
When I got covid in my late 30s, it felt so much like mono. I felt like I was 15 again. I think this significantly contributed to me developing lasting fatigue from covid, and eventually developing long covid and ME/CFS.
How feeling my emotions and processing trauma helped me heal
While healing from long covid, I regularly practiced the body-focused meditations. I also journaled in the way taught by Nichole Sachs chronic symptom recovery. I also did EMDR trauma therapy.
Through doing these practices regularly, in small, tolerable doses, I changed so much.
I learned to look for my own wants and needs. I learned to identify my emotions and listen to what they were telling me. I learned to look after myself, not only other people. I became significantly less conflict-avoidant and people-pleasing.
I made time for play, fun and joy. I learned to say no to other people. I learned to say no to myself, when I wanted to push myself too hard.
And this all made me feel safer. Not just think I was safe. But actually feel it.
This was despite my world not actually being very safe. My long term disability through work had been denied. My government financial assistance did not even cover my housing costs. I had almost burned through my savings. I was extremely tired, in pain and not able to think very well. My doctors told me I would never recover and this would be the rest of my life.
But as long as I could feel a little bit safer with my body and my emotions, despite these very real problems, my symptoms started get better.
And I started to be able to behave as if I was safe, by socializing more, exercising more and even starting to work, the symptoms went away.
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