TOUCHED BY LYME: With so much to do, how do advocates keep going?
Lisa Kilion’s family has experienced both Lyme disease and Pediatric Acute-onset Neuropsychiatric Syndrome, or PANS.
PANS is an autoimmune reaction that can be triggered by strep, pneumonia, Lyme disease, Coxsackie virus and other conditions.
Symptoms can include OCD, food aversion/restriction/anorexia, tics, joint pain, handwriting decline, math-fact loss, depression, rage, oppositional/defiance, ADHD and more. PANDAS–specifically caused by strep–is a subset of PANS.
It’s a tough situation for families, and the medical establishment is often not helpful (to put it mildly). Parents of kids with PANS/PANDAS are forced to be full time advocates for their children–even if the parents are sick themselves.
Part of Lisa’s advocacy work has included a blog she started nine years ago called PANS Life. It shares information about many aspects of PANS/PANDAS, Lyme and related matters.
Recently, Lisa tackled the subject of “advocacy fatigue,” She asked various people within the Lyme and PANS communities to tell a bit about how and why they became advocates–and to offer thoughts on the question of avoiding burnout.
I was honored to be among those asked. Here’s what I said:
How it all started
I’ve been involved with Lyme disease advocacy ever since my then-13-year-old daughter started experiencing troubling physical symptoms back in 2005. Of course, at first, we didn’t know we were dealing with Lyme and related ills. So, I was just advocating for my daughter’s health—trying to get help for the mysterious condition that forced her into a wheelchair practically overnight.
By the time we finally figured out that we were dealing with Lyme and made our way to a Lyme-literate physician, our family came to recognize that we were battling systemic deficiencies within the whole medical system. This was a much bigger problem than just one child’s medical needs.
However, that one child’s needs overwhelmed me. For quite a while, I couldn’t think beyond what it took to care for her and to keep our family functioning. Doing anything more than that was utterly beyond my capabilities.
First steps into advocacy
In time, however, her health slowly improved—and as it did, my world opened up a bit. I learned as much as I could about Lyme-related issues and looked for ways to get involved. I co-founded a Lyme support group and helped lead it for eight years. I also became active with LymeDisease.org.
In 2009, I started writing the “Touched by Lyme” blog, now in its twelfth year. A few years later, I co-wrote a book called When Your Child Has Lyme Disease: A Parent’s Survival Guide, with Sandra Berenbaum, a Lyme-literate family therapist.
Throughout my years with LymeDisease.org, I have helped put on Lyme patient conferences, organized protests against the IDSA Lyme guidelines, lobbied for legislation in Washington DC, and given both verbal and written comments to the federal Tick-Borne Disease Working Group.
I’ve met many patients and advocates over the years and am very familiar with the concept of “advocacy fatigue.” Many advocates are struggling with chronic tick-borne infections themselves or have loved ones who do. They are highly motivated to try to change the world for the better. But sometimes, they overextend themselves—and suffer because of it.
About 10 years ago, a woman I knew overcame years of sickness and disability to finally achieve what seemed like a good state of health. It was a dream of hers to return to long-distance cycling—this time to raise money for Lyme research. Although her first big ride was a fundraising success, she had a huge relapse after all that exertion. It set her health way back. It must have been terribly discouraging for her.
Social media opens a way
When I first entered Lyme advocacy, Facebook and Twitter were in their infancy. And Instagram hadn’t been invented yet. Now, these and other social media platforms offer opportunities for people to help raise Lyme disease awareness in ways that don’t require a lot of physical stamina.
Furthermore, because of changes brought about by the COVID pandemic, many events that used to be in person are now held online. This is a boon for would-be advocates.
I was pleased to participate in the Center For Lyme Advocacy’s Virtual Fly-in in February 2021. Advocates from all over the US met with Congressional staffers to lobby for increase federal funding for Lyme disease—via zoom. As much as I had enjoyed prior in-person meetings in Washington DC, the new way of doing things was so much easier, on so many levels. (And, importantly, many more people could participate.)
So, what advice would I offer other advocates, on preventing “advocacy fatigue”?
1. Take advantage of online resources to educate yourself as much as possible about what’s going on in the Lyme community and related issues. (Shameless plug: Sign up for LymeDisease.org’s email newsletters. I curate these weekly news summaries and strive to keep my readers well-informed!)
2. Join online forums to foster connections with others in the Lyme community. Facebook offers many such groups. Another choice is US National Lyme group, also sponsored by LymeDisease.org.
3. If you are in the US and have personally have been diagnosed with Lyme disease, I urge you enroll in MyLymeData. (Parents can also enroll on behalf of their minor children with Lyme.) This online registry has collected millions of data points about how Lyme disease affects individual patients. It helps researchers and also provides important information to health care policy makers. MyLymeData offers an easy way for your experiences to be included in the collective picture.
4. Don’t ignore your own physical and emotional needs. One advocate I know who overcame serious illness arranges her life to take a nap every afternoon, without fail. She knows it’s essential for her continued well-being.
5. Even though I’m pointing you towards a lot of online activity, don’t be its captive. Be willing to periodically unplug from the world of Lyme activity—and from the internet in general. Get out in nature, if you’re able to (with proper tick protection, of course). When you can do it safely, connect with other people in person. And find whatever nourishes you spiritually—and do it often.
You are more use to yourself, the Lyme community, and everybody else if you DON’T run yourself into the ground!
Here are links to other advocates weighing in on the topic:
Gabriella True, president of ASPIRE: The Alliance to Solve PANS and Immune Related Encephalopathies
Wendy Nawara is a veteran PANS parent who now works as an independent consultant specializing in PANS/PANDAS/AE.
Anonymous parent has been championing legislation in her state. Due to privacy concerns, she prefers not to give her name.
Jessica Gavin is founder of Pediatric Research and Advocacy Initiative (praikids.org). The organization advocates for children with neuroimmune disorders.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at email@example.com.