In May 2020, after months of over fifty symptoms, including a resurgence of old pain and some new ones, Sheren came across a British Medical Journal article that mentioned a myriad of fluctuating symptoms that sounded very familiar. Sheren had not experienced any severe respiratory symptoms, anosmia, or high temperature, but she ticked the boxes for what patients had started calling Long COVID, or Long Haul COVID (recent NIH proposed name: post-acute sequelae of SARS-CoV-2 infection, or PASC). She then kicked into a self-management routine and joined Long COVID Support Group on Facebook (which at the time only had a few hundred members, now over 36,000), and later Facebook COVID-19 Research Involvement Group when it was launched.
In this presentation, Sheren will share experiences from other members of the support group, and insights from her own lived experience, including things she wished she had done differently, the highs and lows, micro-pacing including with cognitive tasks, managing persisting pain along with Long COVID symptoms, assessing when to reach out to a doctor, how best to be heard and communicate with clinicians who may not be familiar with Long COVID to access appropriate care pathways, and how to deal with conflicting advice.
- Recognize how patients are the experts when it comes to their pain and symptoms, rather than dismissing their experiences.
- Learn to watch the way information is communicated, including words used, voice tone, facial expressions, and body language. In telehealth, note that words and voice tone may convey a lot more than was intended.
- Acknowledge how some patients may be better informed regarding COVID-19 and must be heard.
- Understand how health professionals must see the bigger picture and whole-person care and better assess what needs to be prioritized in terms of treatment.
- Recognize how keeping up to date with developments in understanding COVID-19, and Long COVID is essential in order to serve patients better. It is unacceptable not to stay informed.
- If what is being heard from a patient doesn’t lay within the scope of expertise, refer on, in a timely fashion.
- Remind patients that telehealth and online services are available.