Follow The Invisible Kingdom on social media and join the quest for visibility and community. Each channel gives you an opportunity to read and be inspired by others’ stories - and to share your own. I’ve created a Facebook group called The Invisible Kingdom or by tagging @meghanor on Instagram or Twitter and using the hashtag #invisiblekingdom.
Meghan has received so many great questions from all of you related to coping with chronic illness. Here are some of the most common inquiries, answered.
What doctors do you recommend?
Meghan is a writer, not a doctor, and so she is not able to give medical recommendations. For more information, advice, or help finding doctors, we suggest reaching out to advocacy organizations or medical centers that can help connect you with resources. Look for a doctor with whom you have a good relationship, and who listens openly to your symptoms, taking a patient-centered approach. The Autoimmune Association has a lot of resources; the organization notes that it takes many people years to get a diagnosis. The first step is finding a doctor whom you trust. Other resources include The Mount Sinai Center for Post-COVID Care and the many advocacy groups for ME/CFS, chronic Lyme disease/PTLDS (including those I discuss in my book, including Bay Area Lyme Foundation, the Cohen Center for Health and Recovery from Tick-Borne Diseases at Columbia University, the Johns Hopkins Lyme Disease Research Center, ILADS), dysautonomia, Ehlers-Danlos Syndrome, and more.
What treatment(s) have helped you most?
Getting an accurate picture of the medical conditions we are living with is crucial to finding the answers - and the help - that we need. Consult a medical professional for more.
What do you do if a doctor doesn’t believe you?
It’s important to find a physician who will be an active and clear-eyed partner with you in your care. So if you don’t find someone who is that to you, then keep trying (as hard as that may be). It took some of us five years or more to find the right professional(s) to help care for us, but the wait was worth it. In the end, you deserve a qualified doctor who takes you seriously and treats you with respect.
What diets have helped you?
Again, Meghan is unable to give medical recommendations, but she describes various diets she tried and their effects on her in The Invisible Kingdom. Terry Wahls, M.D. has written a lot about the diet she used to help manage her M.S. Meghan worked with certified functional nutritionists such as those trained here.
What do you do when a partner or a family member just doesn’t understand?
Living with chronic illness can feel isolating—even well-intentioned family members and loved ones often just “don’t get it.” Or your suffering becomes normal to them, even as it remains always novel—and painful—to you. We have found that it’s helpful to share certain medical resources and first hand testimonies from others with our closest family members and friends as helpful, third-party context. Meghan also often shares this New Yorker article with people who need to better understand what is going on with her.