What We Wished Our Loved Ones Knew About Dealing with Lyme Disease
by Jenny Lelwica Buttaccio, OTR/L
It’s difficult for our loved ones to comprehend fully the suffering we endure with persistent Lyme disease. And because we don’t always look sick on the outside, the important people in our lives can become confused by our symptoms and the drastic changes we must make to our lifestyle to heal. Confusion aside, however, we need our loved ones in our corners as we navigate this bumpy road.
My hope for this article is that our loved ones would gain some insights into what it’s like living with a chronic illness and how best to help and support us. Here are five things for them to know when it comes to dealing with Lyme disease:
The Illness Is Here to Stay
A chronic illness is constantly recurring. There are ups and downs, periods of improvement and decline, but for those of us living with Lyme, we may never truly be free from it.
The truth is that improvement from any illness is tricky, with many twists and turns. With time comes many trials, errors, and money to find a treatment strategy that yields even slight progress.
But just because our symptoms aren't obvious, it doesn't mean they've ceased to exist. We don't want to burden you or add more tension to a stressful situation, so we tend to minimize or shield you from our day-to-day realities.
There’s No Quick Fix or Magic Pill
We know your intentions are good, and it pangs you to see us suffer. But with that being said, your suggestions to try more vitamin D, exercise, meditate daily, volunteer, and see this brilliant chiropractor or doctor who cured one person of said illness, are rarely helpful.
Please let me explain.
We'll likely see more doctors for our symptoms than most people will see in a lifetime. We spend exorbitant amounts of money trying to get well. We investigate countless treatment options — even treatments that may seem too alternative or like medical quackery to people. We're willing to try almost anything to get well and follow every feasible (and sometimes unconventional) lead.
We immerse ourselves in TikTok videos, Facebook groups, Instagram hashtags, and Twitter threads. We communicate with people from around the globe who've also been diagnosed with Lyme. We ask a lot of questions to our fellow chronic illness pals, and we share treatment ideas. We watch as some of us improve; we note what helped and what didn't. We are reservoirs overflowing with information, and we live and breathe the hope of getting well 24/7.
While we appreciate the time and effort you took to google our illnesses, your suggestions are almost always too basic for where we're at in our journey with a long-term disease. We are grateful that you care, but unless we specifically ask you to help us research treatment options, it's better to leave the treatment planning to our medical professionals and us.
Saying “No” Is an Act of Self-care
Please don't take it personally if we say "no" to your invitations for social outings or get-togethers. It's easy to forget we battle a set of invisible symptoms the rest of the world never sees. Our stamina, strength, and ability to tolerate pain have new limits, and we adapt our lives, pace ourselves, and cautiously allocate our energy to finish our daily activities.
Somedays, we overdo it and leave nothing to spare for the next. If we decline an invitation, we've most likely used up our energy reserves or have reached our pain threshold for the day and are saying no as an act of self-care and preservation. Lyme disease can cause us to spend less time out and about and more time at home doing less energy-demanding activities.
Asking For Help May Not Be Easy For Us
Asking for help is crucial for managing our health better, though it's hard for many of us to do it for various reasons. If you're interested in helping us (and we could certainly use it!) but don't know where to start, bringing dinner over, dropping by to mop the floor, taking out the garbage, dusting, walking the dog, or watching a movie are almost always welcome ways to give us a hand and spend quality time with you in the process. These simple acts of kindness let us know we're seen and not forgotten.
The Bottom Line
It’s devastating to watch our friendships and family connections slip away because we can no longer socialize like we once did. We need the support of our loved ones no matter how long this journey takes, and it will likely take a while — we value your presence in our lives.
Please continue to share your lives with us. We can laugh, cry, celebrate, and support you. We make great friends and companions, even if our friendship shifts from wine, parties, and fancy restaurants to a cup of tea on our couch while binge-watching Netflix.
