9 Things Long-Haul Covid can Learn from Chronic Lyme Disease
A maligned and misunderstood tick-borne illness can inform patients facing a similar response to infection with Covid-19.
1. You are sick. This is not “in your head.”
Patients with complex Lyme disease know the experience of being referred for psychiatric care, being told “we can’t find anything wrong with you,” and having doctors recommend “exercise, antidepressants, and a positive attitude” to resolve symptoms.
You’re the expert about how your body feels. Trust yourself, advocate for your needs, and seek health care providers who will listen.
2. Your world will change.
Many of the things you’ve relied on — your intellect, physical abilities, regular employment, social status, relationships, and financial resources — will be impacted by your illness.
This will be shocking and disheartening. Take time to mourn what you lose. Eventually, however, the vacuum created by lost friends, resources, and opportunities, will be filled with something new.
3. The dominant culture is not designed for people who are struggling.
You’ll feel left behind when everyone keeps moving forward though you can’t. It will be a big adjustment to not have your productivity be the determining factor of your worth.
Your body is only capable of so much at this time. Fighting this reality only adds to your stress. Accept that this will be a period when you can’t be as productive and engaged as you want to be. (For people who are financially or socially precarious this will be even more challenging.)
4. Do not assume health departments, medical institutions, and policy makers will understand your illness or do the right thing.
The pace of the establishment is much slower than the speed you want for your recovery. People confident in our medical system may be shocked by how limited resources become once they don’t fit an established pattern of illness. Those who are marginalized can find the experience even more discouraging.
Know you may have to educate health professionals about your illness. Even “experts” may require help understanding the nuances of your health condition and circumstances.
5. It’s a complex illness.
Long-Lyme patients know what it is like to see ten different specialists and be given ten different diagnosis (or none at all!) Long-Covid is a systemic illness which means there are multiple, interdependent factors that will need consideration and treatment.
You will not be cured by a singular remedy. Lifestyle changes and both medical and non-medical interventions will be important for healing and recovery.
6. Change your expectations.
Not knowing how long your illness will last can be agonizing. Symptoms can wax and wane, and what is possible on one day is unimaginable the next. Redefine “health” as an ongoing, non-linear, process.
Your abilities have changed so (as much as possible) you must revise your lifestyle too. Familiar, established routines may no longer be applicable in the new context of your illness. Even people closest to you may need help understanding this.
7. There are people who want to profit from your illness.
Long-Lyme patients know the devastation of reduced cognitive abilities, unemployment, physical exhaustion, memory impairment, and undermined relationships. Some “clinics” and “treatment centers” prey on peoples’ desperation to regain function. Others actually do help patients recover.
Maintain a healthy skepticism and thoroughly research your options. Trust your intuition and be open-minded about unfamiliar interventions and lifestyle choices that could support healing and well-being.
8. Find a network of support
Economic resources, social support, communication, mental health, and life-skills all contribute to better outcomes for patients with chronic illness and their families — it’s significant that these protective factors are the very characteristics placed most at risk by an illness like long-Covid.
Learn to see asking for help as a success instead of a failure. If you have caregivers, encourage them to get the support they need too.
9. If you are able to, please advocate.
Right now, the etiology of long-Covid, like Lyme, is secondary to the experience of the disease. Loss of employment, fundamental identity changes, social isolation, depletion of resources, suspicion, and skepticism make up the collective long-haul experience.
Themes of misdiagnosis, infections mislabeled as psychiatric illness, and patients having to fight for basic consideration and care are common to the long-haul experience. These themes reflect more than the challenge long-haul illnesses present to medical researchers and diagnosticians, they reflect the true nature of our systems and communities that struggle to support, or even accommodate, people who are not functioning at their best.
Long-haul illnesses are a reminder of our strengths and vulnerabilities as individuals and systems. The medical community is only beginning to understand the way Covid, like Lyme, EBV, and other infections, can have long-term health impacts. Just as long-Covid will inform medical communities about the truth of post-infectious syndromes, the Lyme community can inform Covid long-haulers about how to live with that truth.