Advice to Healthcare Providers

Many of the people we spoke with offered advice to healthcare providers based on their experience of living with, and seeking help for, long COVID. The importance of believing patients – even when their symptoms were hard to explain using conventional diagnostic methods, seeing patients as the experts in their own condition, communicating thoughtfully and with compassion, and being open to new approaches as we learn more about long COVID, were common themes.

 

Acknowledge that symptoms may be linked to long COVID

One of the most difficult aspects of peoples’ long COVID experiences was feeling like they were not being taken seriously by doctors and other healthcare providers. When conventional tests and examinations did not explain their illness, many were told that their symptoms were due, not to COVID, but to other causes such as anxiety, depression, ADHD, menopause, or their weight. Some female participants felt dismissed by their doctors in a way that was part of a longer history of women’s complaints not being taken seriously. In contrast, when doctors and other healthcare providers remained open, offered reassurance and whatever care they could, this was extremely important to people living with symptoms of long COVID.

Hollie felt, “They’re so quick to say that it’s anxiety, or it’s all in your head. They’re very, very quick to say that … We have all these broad, strange symptoms … but I think they don’t realize that they’re all tied together.”  Anna had some difficult experiences when she went to hospital. She explained, “When we come there in ER, we don’t come because we want to, we come there because … we need their help to feel better. And even if they cannot make us feel better … they can believe us because we are not lying.” Aislene was “begging doctors to listen to their patients and to not be fat phobic.” She said: “I know that being overweight is a health risk but blaming everything on somebody’s weight ignores the underlying problems and can kill patients or make them suffer unnecessarily … they know their body more than anybody and when they get dismissed it can lead to serious ramifications that impact them for the rest of their life.”

 

Be thoughtful about communication

The people we spoke with were often highly stressed by their illness. Many felt abandoned by the healthcare system. And while they understood that doctors might not have any answers for them, they felt it was still important for them to communicate in a thoughtful and sensitive manner. 

As Cher explained, “The phrasing of communication is important because we’ll play that tape over and over and over and over in our head … If you say ‘we’re going to discharge you because there’s nothing we can do for you,’ it feels completely dismissive, like my experience is unimportant. It would be pretty easy to say, ‘I can’t help you but here are some strategies and resources who could.’ And that would make a huge difference.”

 

Even if you can’t treat you can care

All of the people we spoke with understood that long COVID is a new condition with hundreds of possible symptoms and, as yet, no standard approach to diagnosis and treatment. Many also acknowledged how stressed and overworked healthcare providers are. Nonetheless, they wished that healthcare providers would show more compassion even when they are unable to offer an effective treatment.

 

Be honest with people about their condition

Some of the people we spoke with had been diagnosed with myalgic encephalomyelitis (ME or chronic fatigue syndrome) which is a syndrome people sometimes develop after a viral illness. ME is a chronic condition that has no cure. These people urged healthcare providers to be honest with people who were probably going to be living with this condition over the long term. They felt it was important to acknowledge their situation so that they could make plans for their lives going forward.

 

Refer patients to rehabilitation therapists, complementary and alternative care

Several of the people we spoke with had seen healthcare providers such as physiotherapists, occupational therapists, chiropractors, naturopaths, acupuncturists, and reiki practitioners for help dealing with their long COVID symptoms. They recognized that some of these practitioners were outside the mainstream of western medicine and might not be considered helpful by their doctors. That said, they felt that when your doctor says they can’t help you, it’s reasonable to look for help elsewhere. Many wished that their doctors were more open to recommending other forms of care to their patients.

Lori urged doctors to think outside the box. She said, “You hear all these terrible stories of people not getting the help because the test was negative. Well, think outside the box, think outside of the box. And whether it be Eastern medicine or some other thing, acupuncture or reiki, something, suggest it, give people hope to try it. There are so many things out there that can be tried and doctors just want to do the A, B, and C and if those are negative then that’s it. Think outside the box.”

Nick would like to see more collaboration between mainstream Western medicine and other forms of care. He maintained, “The medical community at large needs to accept …the presence of alternative medicine practitioners. And I think there has to be better and more engaged work that happens between both the traditional as well as the Western and the Eastern medicine … there has to be greater communication …  it’s usually dismissed or usually stated that there’s no research behind it … if the patient is asking for treatment and it has worked in certain situations, there has to be an open conversation with the doctors on what are the pros and cons of being on it.” Similarly, Angela argued that other care providers may be able to help so why not be open to them? As she put it, “If they can’t fix it, or if they don’t know what to do, then they have to be more open to naturopaths, to all of those other therapies … A lot of the things that people are dealing with are things that naturopaths can help with, and physiotherapists can help with. And a lot of that pain that people, a lot of people are feeling pain, chiropractors can help with all of that … But a lot of doctors are just not open to that … they’re just not open to that and I wish they would be.”

 

Recognize that patients are the experts in their condition

Long COVID is a newly emerging condition. This means that scientists and healthcare providers are still learning about it and our understanding of long COVID is constantly changing. For this reason, people we spoke with felt that it was more important than ever to see patients as the experts in their condition.

 

Learning from patient experience of other post-viral illnesses

While long COVID is a newly emerging condition, we have known about other forms of post-viral chronic illness for many years. Several of the people we spoke with pointed out that there were many similarities between long COVID and other post-viral conditions such as ME (myalgic encephalomyelitis or chronic fatigue syndrome). They felt there was much to learn from people living with such conditions and urged healthcare providers to think about long COVID in that way. As aerik argued, “Even though … there is lots we don’t know about COVID specifically … there is a lot that we do know about chronic illness and I wish providers would connect those dots and I wish that they would listen to folks who have been living with those conditions … long COVID is relatively new, but if you broaden the field to other long viral illnesses, like chronic fatigue, the information is out there.”