Tag Archives: patient experience

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What Can We Learn from Our Response to COVID-19?

What can we learn from Lyme disease patients and our work in tick-borne disease research that can be applied to the current COVID-19 crisis?

 

by Robert Kobre, Chairman of the Board, Global Lyme Alliance

Most of us in the United States are currently living in extreme fear of contracting the new coronavirus, and our anxiety levels are at all-time highs. Few populations in the U.S. can empathize with this extreme anxiety more than those who already suffer from weakened immune systems, and the debilitating health condition known as Lyme disease. Infection by SARS-CoV-2—the virus that causes COVID-19—is transmissible person-to-person while Lyme disease is a bacterial infection contracted through the bite of an infected tick. However, Lyme patients can relate to the uncertainty of diagnosis, fear of failed treatment, and the impact of isolation.

There are an estimated 427,000 new cases of Lyme disease in the U.S. each year, with as many as two million people projected to suffer from post-treatment Lyme disease by the end of 2020. Global Lyme Alliance is leading the research effort to find the answers through science that will provide for a reliable diagnostic test and effective treatments. We also work every day to address the fears, anxiety, and pain faced by Lyme patients and their families. So, what have we learned trying to tackle Lyme disease that can be applied to the COVID-19 crisis?

Timely and accurate diagnostic testing is the key factor in the management and treatment of both diseases. Current diagnostic testing for Lyme disease infection is very unreliable, with as many as 57% of patients falsely testing negative. Like COVID-19, symptoms may be indicative of something other than Lyme, leaving the patient stressed, unsure of what to do and frightened. The consequences of a missed diagnosis in both diseases can be devastating. Unlike COVID-19, death resulting from Lyme disease is rare. However, Lyme disease can be crippling physically, mentally and emotionally for months, years or even a lifetime, and unless treated early there is no definite cure. The Coronavirus and Lyme bacteria are complex pathogens, both of which will require massive focus and funding to eradicate.

As of the morning of April 14, 2020 there are more than 550,000 confirmed cases of COVID-19 in the U.S., and the number continues to grow rapidly. However, when COVID-19 first came to the U.S., both its presence and severity were minimized. People who were afraid and cautious about limiting contact with others were mocked, told they were paranoid, that it was “in their heads”, and that it was no different than the regular flu. This same dismissive and belittling attitude has consistently been directed against long-suffering Lyme patients, who are similarly told they are paranoid, alarmist and irrational for worrying about being in high-risk places outdoors.

COVID-19 has forced sheltering-in-place and social distancing on people who live in fear of interacting with others who may be infected. Similarly, people who live in endemic areas of Lyme disease fear going outdoors and interacting with nature where they can easily contract Lyme disease and other debilitating tick-borne diseases. Every step on the grass, walk in the woods, or something as simple as going to one’s mailbox could mean a lifetime of incapacitation. So, the Lyme community understands what America is going through.

Everyone hopes that a cure or vaccine for COVID-19 will arrive soon. The virus’s eradication, and the immune response to it, must be the top priority of our governmental leaders, America’s research universities, R&D centers, and pharmaceutical companies.

In time, and thanks to American know-how, creativity, outside-the-box thinking, and pure grit, we will find ourselves on the “other side” of this pandemic nightmare. When we do, let us hope that we have learned to be more compassionate and sensitive toward our fellow citizens who may be suffering from other devastating illnesses where testing is uncertain, cures elusive, and fears very real. At GLA, our hearts and prayers go out to all those suffering from COVID-19 or have lost loved ones to this cruel and isolating disease.


Additional COVID-19 and Lyme Disease Resources:

GLA POV: Parallel Pandemics: COVID-19 and Lyme Disease
Blog: Q&A on COVID-19 and Lyme Disease with LLMD
Blog: Personal Patient Experience with COVID-19 and Lyme Disease
Letter: GLA CEO Addresses COVID-19 and GLA Community

The Pressure of Platitudes: Patients Are Only Human

by Jennifer Crystal

As I wrestled through the darkest years with Lyme disease and its co-infections, there were times when I had to be brave…Now that I am in remission, I try to offer inspiration to other patients through my writing, and I’m grateful to hear when I’ve succeeded.

One of my creative writing students, a cancer survivor, recently wrote about a time when she snapped at a fellow patient. This was while they were both receiving chemotherapy. A man sat down next to her and attempted to make small talk.

Just wanting to be alone, my weary student made a nasty comment, and he left.

You would think she wrote about this exchange years after it happened because she felt bad about whatever she had said. In fact, she wrote about the experience because it illustrates an important point that often can be missed: patients are only human.

Patients of any serious or chronic illness frequently hear, “You are so brave!” or “You’re such an inspiration!” These statements can be true, and can be nice to hear. As I wrestled through the darkest years with Lyme disease and its co-infections, there were times when I had to be brave: when I got my PICC line in, when I was fighting doctors and insurance companies who didn’t believe me, when I underwent emergency gallbladder surgery. Now that I am in remission, I try to offer inspiration to other patients through my writing, and I’m grateful to hear when I’ve succeeded.

But there were also times when I wasn’t brave, too. Those times when I didn’t advocate for myself, times when I didn’t stand up to someone, times when I wanted to give in to the illnesses. There were and are still times when I am not an inspiration after all: times when I’m grouchy, times when I overreact, times when I snap at someone thoughtlessly. Times when I, like my student, am all too human.

No one can be all one thing all the time. Part of being human is being multi-dimensional. Therefore, blanket statements like “You are so brave!” and “You’re such an inspiration!” don’t capture the full patient experience. Especially when given without context—like when you say it to a cancer patient you’ve just met and know nothing about him or her. In this context such compliments seem disingenuous.

In her book Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, Laurie Edwards writes, “I fear it’s too easy to lump together platitudes about those who are sick—that we are somehow stronger or better people for having endured pain or extreme obstacles; that because we’re sick, we’re martyrs and capable of serenely accepting challenges, setbacks and procedures without complaint.”[1]

Sometimes we are strong and serene and capable of enduring more than we ever imagined. But usually we withstand obstacles simply because we have no choice.

“Very often, illness doesn’t allow the luxury of courage; pragmatism and practicality dictate the extent of our fearlessness,” writes Edwards. “I take the medications whose side effects I hate because that’s all there is left to do. There is very little room for interpretation, inspiration, or intrepidness in these situations.” As a patient who Edwards interviewed put it, chronic illness makes us better sufferers, not better people.1

Platitudes can also put unintentional pressure on patients to live up to super-human expectations. They may think they have to put on a good face even when they feel awful, or that they have to be brave even when they are scared. Patients wrestle with how they “should” feel or look, especially when they hear that other well-intentioned but off-putting statement, “But you don’t look sick!”

Beyond negating how sick someone is feeling, such a  comment also makes them think they shouldn’t try to look their best when out in public so that people can see how sick they truly are. I can’t imagine the mixed messages model Bella Hadid must contend with, since it’s her job to look beautiful but also to show that she is suffering from Lyme.

So what is a healthy person to say to someone with a chronic illness? My first piece of advice is “ask, don’t tell.” Instead of telling the person what they are, ask them how they feel, both physically and emotionally. Are they feeling brave? Scared? Cranky? Let them know that they don’t have to put on an act for you.

Second, be honest with what you feel and see. If a patient has done something that you recognize to be brave or inspirational, by all means, let them know, but be specific. Say something like, “I think you were brave to look for a different doctor” or “That quote you posted about chronic illness really inspired me to better appreciate my good health.” This way, the patient knows your compliment is genuine. You’ll feel better giving it, and they’ll feel better receiving it.

Finally, remember that the best way to help someone is by empathy. Let your friend or family member know that instead of telling them what to do, how to feel, or what they are, you are simply there to listen and to be with them. Chronic illness strips patients of so much, but it brings to the forefront their humanness. Let the patient know that you, too, are only human, and that both of you walk that journey together.

[1] Edwards, Laurie. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties. New York: Walker and Company, 2008 (41, 42)


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]