May 29, 2018

Saluting the Caretakers of Lyme Patients

May 29, 2018

Saluting the Caretakers of Lyme Patients

by Jennifer Crystal

On Mother’s Day, I read a Facebook post that said “For the sake of equity, shouldn’t we show appreciation for mothers every day?” I agree. But if we’re talking equity, shouldn’t we also show daily appreciation not just for mother figures, but also for those who father, and those who offer familial support in any way whether they are blood relatives or not?

Last year for Mother’s Day, I wrote a tribute to the moms of Lyme. As I reflect this year, I realize that the people on the front lines fighting for support, validation, research, and treatment for Lyme patients are not just moms—they’re also dads, grandparents, aunts, uncles, siblings, friends, neighbors, coworkers, and support group members. This year, I want to salute them all.

Some patients may read that statement and roll their eyes, because they haven’t yet found the support they so desperately need. When someone is diagnosed with cancer, no one questions the diagnosis or tells the patient “I know someone who had cancer. They got over it,” or “You’re probably just depressed/anxious/lazy” or “You just need a better mindset.”

But Lyme patients hear these types of comments—these gross inequities—all the time, often from the people who are supposed to support them most. There are patients living with Lyme illiterate family members. There are patients shunned by their families. There are patients who lose close friends, patients who lose jobs, patients who get strange looks from neighbors. These patients need the same love and help that any sick person needs, but instead they are often dismissed and denied because their illness is said to be controversial.

I know how frustrating these reactions can be and how isolating they can make someone feel. I also know that patients don’t really have the  time or energy to fight for support from the people who are already “supposed” to be providing it. But support can come in many forms. On Mother’s Day and Father’s Day we also celebrate aunts and uncles, grandmothers and grandfathers, pet parents, foster parents, babysitters, and anyone who offers parental-style guidance. Similarly, Lyme patients can find support in unusual places. I’ve written often about friends who stood by me when I did not  have a diagnosis, even if they didn’t understand my illnesses, even if they lived across the country. They sent care in the ways they could: they called, they emailed, they wrote cards. They showed that they were with me, unconditionally, every step of the way.

There are so many other people fighting the good fight for Lyme, even if they aren’t in a direct caretaker role. For example, the classmate I haven’t heard from since college who donates to my Lyme fundraiser every year. Or the Facebook acquaintance who reaches out to say, “I don’t know you well, but I have been through a similar experience.” The patient in France who emails me to share her story. The husband of a friend who watches a video about Lyme because he wants to learn more.

It turns out, people do come out of the woodwork for Lyme, just in different and perhaps more subtle ways.

Then there are, of course, the actual mothers and fathers who stay up nights with their sick children—even when those children are adults—who go to doctors’ appointments, help with medical costs, prepare meals, participate in awareness events, start support groups and even advocate for legislation to get insurance coverage for patients. And there are the grandparents, aunts, uncles, siblings, and cousins who do the exact same thing, or who show support in their own ways, whether by offering their homes as a place of respite or taking patients on a short drive for a change of scenery.

So there is hope, and there is help. If you are a Lyme patient feeling unsupported, I promise that you are not alone on your journey. Support is out there; you just may need to look for it in unconventional places. Your neighbor, or that co-worker you hardly know, or someone in an online support group may understand your illness better than your closest relative.

And there is gratitude. To all the caretakers of Lyme, whoever you are, whatever role you play, I raise my (gluten-free, sugar-free, non-alcoholic) glass to you. Thank you for your hope, your encouragement, your support, and your love. We couldn’t do it without you.


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 jennifercrystalwriter@gmail.com

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