Advocacy: Fatigue & Inspiration

Photo by Julia Larson from Pexels

How many of you are tired? Of parenting, of constantly advocating for your family, yourself? Perhaps some of you have taken that advocacy to the outside world and helped to plan conferences or led support groups, etc.? Who are the heroes amongst us?

Look in the mirror now. 

If you’re the parent of a child with an illness, you are that hero.

Smile, give yourself a high five, a pat on the back, a lotta love. Because you rock.

When these diseases hit our family about a dozen years ago, I didn’t know many people who were also dealing with them. Online support groups connected me with amazing angels--and although I’m not religious, I think of them as angels. 

The woman who was studying to be a nurse who told me how to detox my child when the LLMD (yes, a Lyme Literate doctor) told me to go to a psych hospital for the horrible Herxheimer reaction to Babesia meds. At a time when hospitals were kidnapping children because their doctors didn't acknowledge neuroLyme.

The moms who always had a kind word and a sense of funny snark, who ended up becoming good friends (well, yeah, duh). 

The lovely lady who'd never met us yet gave us the use of a beach cottage so we could have a family vacation.

The gutsy women who joined with me to push for PANDAS legislation in our state.

These connections, relationships, friendships grew out of wanting answers and also needing to help others navigate this path without hitting the roadblocks we’d encountered. A sense of purpose drove me--how could I rise above this suffering to alleviate someone else’s pain? 

I don’t even know how to explain the intense desire to help someone else--it grew from wanting meaning in all we’d gone through to needing life's meaning in the world at large. 

Advocacy led to incredible connections, new friends who TOTALLY got me and understood everything I was going through. Advocacy led me to meeting strong women and men.

I started PANSLIFE as a means to express what I was going through and to offer help to others. One thing led to another. With a friend, I began an in-person support group. And that led to administering online support groups, helping with PANDAS conferences, helping four other women across the country to create the Lyme Disease Challenge, running the PANDAS table at Lyme conferences, writing articles about these illnesses, getting involved in my state’s PANDAS/PANS legislation, being invited to be part of my state senator’s Health and Mental Health Committee. 

At my sickest (with Lyme) I did the most with the Lyme Disease Challenge. As my health improved, I bicycled more and spent less time on the computer. I blog less now. With the pandemic, in-person support groups ceased. I don’t know that I want to take up those reins again. 

I’m tired. 

Not Lyme tired.

Not I taught-during-a-pandemic tired.

Not just-bicycled-50-miles tired.

Not I read-100-pages-of-medical-literature-tired when I’m not a doctor.

I still want legislation in my state (it died in committee this year, again). I desire that all doctors, school nurses, teachers and therapists know the signs of PANS/PANDAS and Lyme. I wish that all childen and adults have access to the proper healthcare for this disease (which doesn't only affect the pediatric population).

Will I be the one to do it? Don't know. Maybe it will be someone else. I have advocacy fatigue today. (But I also have teacher fatigue after this most unsettling year and yet I’m going back end of August). 

I considered writing a blog about just that--advocacy fatigue--then thought to ask the incredible advocates, both for PANS and Lyme, who are dealing with this as well. Change is slow, plodding, tedious. How do these people carry on? What propels them? 

Initially, I intended to create one article. But as the responses began to trickle in, I realized that each warrior has so much wisdom to share and deserves their own space. So this will be a series. From the hearts of some of the most resilient, hard-working, wanting-to-make-a-difference warriors to you, I bring you Advocacy: Resiliency. 

Check back for stories.