Overcoming COVID stigmas

In 2020 I started looking for ways to make a difference in the midst of a frightening new pandemic. I read books about the Spanish flu of the last century that took the lives of some in my family tree, and learned that the annual flu shots we have available today stave off the evolving ancestors of that flu, saving the lives of many to this day. There have been historic global illnesses in the distant past, but it is good to remember that we have been through a pandemic just a couple of generations ago and we have learned to build tools to deal with it.

I then took an online contact tracer certification course, but soon sadly found that practicing my new skill would be difficult due to surprising responses on opposite ends of the spectrum. One place where I spend time chose not to provide any opportunities for this job which involves sharing news no one wants to hear, and another only offered full time positions, which was more than I felt I could handle.

Then came the realization that COVID did not end after a couple of weeks of illness for some of the survivors. Part of the population experiences a wild roller coaster ride of a broad array of continuous or intermittent symptoms, impacting their daily lives profoundly. This prompted me to explore the mounting research on the ill-defined phenomena that has been called long COVID, post-acute sequelae of SARS CoV-2 (PASC) or post-COVID syndrome, and I realized that Ai Chi could be helpful in addressing some of the more prominent symptoms. *Look for a manuscript I wrote about this in the December 2022 special COVID edition of the Journal of Aquatic Physical Therapy entitled “Ai Chi for Long COVID: Transitioning to a Post-Rehab Community Program.”

I then proposed a session on community Ai Chi for post-rehab COVID long haulers for an aquatic conference in early 2022, however it did not draw enough interest to hold the class. I then collaborated with an aquatic physical therapist knowledgeable in subacute rehab for long COVID and an aquatic expert in PTSD for a COVID Long Haulers Roundtable discussion at a larger aquatic conference later in the year. We were excited that it brought a high number of attendees from the United States and from around the world for the final class of the conference. They listened attentively and gave positive feedback on our presentations, but there was little discussion on behalf of the participants. Why is there such hesitancy around this topic?

I believe it comes down to a social stigma associated with COVID-19. We all want COVID to just go away, which has resulted in some minimizing its presence and others becoming hyper-vigilant, (a difficult task as best practices for dealing with this brand new virus emerged very slowly over time). The diversity of responses to COVID has made even talking about it a taboo for the majority of people who are tired of a world already filled with conflict. One person in our audience shared with me that she did not want to ask any questions or make comments because she did not want to risk upsetting anyone else.

This stigma is so strong that those who contract COVID worry about others judging them. Will people think they were socially irresponsible, without regard for other people’s health? Will they be villainized or ostracized by acquaintances, friends and family? This can lead to feelings of personal shame and a tendency to hide a positive test or illness from others, or to downplay their experience and not seek help when they need it. And because of this, we can only guess at the true prevalence of COVID or long COVID.

So what can we do in the face of these stigmas, as community aquatic exercise providers? Be aware that these stigmas exist. Set an example by being compassionate, non-judgmental and mindful in your communications with all. Use comforting, inclusive language and avoid terms which could be interpreted as marginalizing. One aquatic provider shared that she feared that her classes would shrink if they were marketed for COVID long haulers. While Long COVID is not a contagious disease that would preclude participation with others, her realization of the impact of this stigma is an important one.

COVID long haulers who want to improve breath, attention and focus, energy levels, strength and balance will find their way to Ai Chi classes, along with those with many other conditions who share these goals. Yes, we need to be aware of and support necessary adaptations for the special needs of each of our clients, but marketing and working from a goal oriented approach rather than a diagnostic one preserves personal privacy and offers protection against stigmatization. And if you find yourself in the midst of a discussion about long COVID, acknowledge the feelings your clients express, listen attentively and feel empowered to correct misconceptions with proven scientific data. Sharing Ai Chi is a gift you can give to everyone.

More information on this important topic is available from The World Health Organization (WHO) in their briefing, “Social Stigma associated with COVID-19.”

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Always something new…

Ai Chi Day 2021 is nearly upon us, and it promises many valuable presentations to expand knowledge of this practice and to spark ideas for new applications. Since Jun Konno introduced Ai Chi to the world over 2 decades ago aquatic specialists and therapists have successfully shared it with clients with many different issues and in a wide variety of settings. When the 2011 tsunami in Japan left many fearful of water, Jun developed new Ai Chi steps to reestablish comfort in the water. When an aquatic expert in the Netherlands could not find warm water pools where she could share Ai Chi, she developed a faster version that brought many of the same result through a different approach. A pediatric therapist found ways to use Ai Chi to help children with neurological deficits. Other practitioners have brought Ai Chi to wounded warriors suffering from PTSD.

Jun Konno’s gift of Ai Chi has proven to be a very useful tool that can be adapted to many situations, if we look mindfully at the possibilities and do not get caught up in performing it in one particular way. Jun often shared the Japanese proverbial saying: “Willow will not break under weight of snow.” The strong branches of trees can support the weight of snow in winter, but if too much snow accumulates, the branches will break. However, the willow tree does not need to bear as much weight. Its flexible branches are able to bend so that snow falls off, yet they are strong enough to spring back in shape.

Those who have been vaccinated against COVID-19 also seem to be protected against the new variants of coronavirus, (at least for now). However the variants are more aggressive and spread more easily than the original virus, making those who are unvaccinated at a higher risk of contracting it. Even a mild case can lead to long lasting, often debilitating symptoms~ now recorded at a rate of one out of every three who have tested positive for COVID. Ai Chi holds the possibility of addressing many of the most common COVID symptoms, however mindful adaptations are needed to avoid relapses. Both the CDC and the APTA have developed guidelines for assessment and outcome measures for post-COVID syndrome for healthcare professionals, including evidence based tools for fatigue, breathlessness, exercise capacity, balance, pain, functional mobility, cognition and anxiety. The results of these measures will shape the Ai Chi practice for each individual. And a prudent model will be needed for safe and effective general community group applications for extended help once therapy services are exhausted. Once again, however it turns out is how it was meant to be.

Please register at the following link to join ATRI for a very special online Ai Chi Day on Sunday, July 25, in celebration of Jun Konno and Ai Chi:
https://ruth-sova-103927.square.site/product/ai-chi-day-2021/452?cs=true&cst=custom

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Getting our hands around Post-COVID-19 syndrome

Polio was once a looming threat in America, with outbreaks in the early 1950’s causing over 15,000 cases of paralysis each year prior to the introduction of the polio vaccine. The wide-scale vaccination process brought cases down to less than 100 cases in the 1960’s. In the 1970’s there were less than 10 cases, with the last reported case in the United States being in 1979. The most devastating symptom of polio is profound muscle weakness, with up to 10% succumbing to it, due to respiratory muscle involvement. Up to 40% of those who had recovered from polio had an unpleasant surprise 15-40 years after their original onset when they experienced the sudden return of muscle weakness, muscle and mental fatigue and joint pain, now called “Post-polio syndrome.” Thankfully this state is not contagious, nor is it considered life threatening, but it certainly can lead to profound disability. I remember my first post-polio syndrome patients as a young physical therapist in the 1980’s. While there is no true cure for the progression of symptoms, studies showed that non-fatiguing exercise could improve muscle strength and reduce tiredness; the key for us as therapists was to find a delicate balance of not too much exercise, but not too little.

Now here we are in the midst of a coronavirus pandemic, with far more cases than we saw with polio. Over 30 million people have been infected in the USA as of March 2021. Early studies report that 20-27% of those who have technically recovered from even mild cases of COVID-19 continue to show symptoms over 2 months later.

This group has been dubbed “COVID-19 long haulers,” with their presentation being called “long COVID syndrome,” “post-acute sequelae of SARS-CoV-2 infection,” or “Post-COVID-19 syndrome.” Their symptoms include various combinations of fatigue, weakness, low endurance, brain fog, headache, numbness and tingling, distorted sense of smell, altered taste, dizziness, blurred vision, chest pain, cough, shortness of breath, anxiety, variation of heart rate and blood pressure, abdominal pain, nausea, low back and other joint pain. It has become obvious that COVID-19 is a multi-organ disease with nervous system involvement that has a very broad reach. For some these symptoms are a bother; for others they are debilitating.

As the number of “long haulers” begins to increase, health care professionals are at a crucial point to find valid ways to help. Ai Chi is a credible intervention for many of the symptoms that COVID-19 long-haulers experience, as it provides core muscle strengthening, increases joint mobility, improves focus, brings relaxation and reduces stress, enhances breathing, decreases heart rate and blood pressure and relieves back and joint pain. Importantly however, we need evidence-based research showing its effectiveness in Post-COVID-19 syndrome. A good place for practitioners to start is with case studies employing good research practices, including informed consent, controlled parameters and valid test measures. And those who have the resources can undertake larger scale studies with control groups based on the initial findings suggested by case studies. As a reviewer for the APTA’s Journal of Aquatic Physical Therapy, I see this as an important research area today that can have a big impact on the lives of many. I am looking forward to seeing your research!

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