Some musings on identity and long COVID

*(crossposted from X)*

First, what is identity?

A simple definition to start with is “the labels you use to describe yourself to others”.

When I had long COVID for about two years, at times I found it useful to “scale back my identification” with having long COVID. What this meant is I made an active point of not always telling everyone I had long COVID. I found that when I told people that I had long COVID it led to a subtle pressure to live up to what people were expecting. The prospect of recovery became less attractive, because it would make me look like a charlatan.

Another thing I noticed is when I was engaging with online discussions, I found myself becoming attached to having long COVID. Online support communities gave me a sense of belonging and provided emotional support. The prospect of recovery became less attractive because I would lose that support and belonging. (Perversely, many of these groups shun people who have recovered and claim they never had the true illness to begin with.)

MECFS orgs and online long COVID communities have promoted a very particular ideology around long COVID. Common beliefs include the idea that recovery is impossible until cures are found, that mind-body techniques are fraudulent and useless, that energy is always constrained to a certain number of “spoons” per day, and that exercise is dangerous and likely to make the condition worse. Another common belief is that the medical system is aligned against people with long COVID and that many doctors don’t recognize the illness as real.

One of my favorite Paul Graham posts is called “Keep your Identity Small”. His main point is that when you identify with a particular ideology it can make it difficult to think clearly about that ideology. Criticisms become attacks on the very core of your being that trigger a strong emotional response, creating a cloud around rational thought.

When people become overly attached to an ideology through identification, they have less willingness to shift their beliefs when new evidence is presented. A rational mind updates when new evidence is presented, but an irrational mind becomes more entrenched.

Now I want to make some deeper points. Our identity is not just the labels we use for ourselves, it runs much deeper.

Identifications are often related to what we value. I identify as a scientist because I value science. I identify as American because I value the founding principles and culture of America. It’s odd, therefore, to identify with an illness. I never valued having long COVID, except perhaps when I derived pleasure from others’ sympathy.

Similarly, identifications can be related to aspirations. I identify as a patient person, not because I’m always patient, but because I aspire to be a patient person. In “Atomic Habits”, James Clear notes that identification helps enable habit change. People trying to quit smoking are more successful when they identify as a non-smoker, not as a smoker trying to quit. It’s odd, therefore, to identify with an illness.

During my recovery from Long COVID, I started telling people I was recovered before I was fully recovered. I started identifying as recovered before I was actually recovered. This sounds ridiculous, but I think it helped with my recovery. It reduces stress enormously if you’re able to trick your brain into thinking things are not that bad. Lower stress can have profound effects on biology — better sleep, improved vagal tone, less time in “fight or flight”.

Tricking your brain into thinking you’re recovered may sound impossible. Well, research shows the placebo effect persists even if people know they are getting a placebo (the “open label placebo effect”). The brain generates fatigue, pain and all the other sensations we feel. These sensations do not come directly from signals from the body, but from how the brain interprets those signals. Those interpretations are informed by the brain’s models. It appears those models can be influenced by conscious thought. Many forms of therapy utilize this, including self-hypnosis, CBT, and neurolinguistic programming (NLP is pseudoscientific, but that doesn’t mean it doesn’t have a grain of truth inside it).

Relatedly, milder self-delusion is simply called “optimism”. Research shows patients who are optimistic have better outcomes, across a wide variety of conditions.

By lessening our identification with an illness, we take an important step towards a possible recovery.

• “The False Alarm Theory of Long COVID Fatigue” by Dan Elton
• Paul Garner: on his recovery from long covid
• “Elicit question — what is the chance of recovery from ME/CFS each year as a function of illness duration?”
• “Hurts So Good” by Suzy Weiss
• “‘It was like being buried alive’: battle to recover from chronic fatigue syndrome”

A few scientific papers:

• Functional Limitations and Exercise Intolerance in Patients With Post-COVID Condition A Randomized Crossover Clinical Trial
• Two-day cardiopulmonary exercise testing in long COVID post-exertional malaise diagnosis
• Effects of a 16-week home-based exercise training programme on health-related quality of life, functional capacity, and persistent symptoms in survivors of severe/critical COVID-19: a randomised controlled trail
• “Psychophysiologic Symptom Relief Therapy for Post-Acute Sequelae of Coronavirus Disease 2019.” Mayo Clinic Proceedings: Innovations, Quality & Outcomes, vol. 7, no. 4, Aug. 2023, pp. 337–48.
• The Oslo Chronic Fatigue Consortium, et al. “Chronic Fatigue Syndromes: Real Illnesses That People Can Recover From.” Scandinavian Journal of Primary Health Care, Sept. 2023, pp. 1–5.
• A systematic literature review of randomized controlled trials evaluating prognosis following treatment for adults with chronic fatigue syndrome
• Efficacy of Cognitive-Behavioral Therapy Targeting Severe Fatigue Following Coronavirus Disease 2019: Results of a Randomized Controlled Trial

See also my Long COVID clinical trials dashboard, and click on the “exercise bar” to see exercise studies.

Websites to check out:

• https://www.positivelycovid.org
• https://www.recoverynorway.org