It’s difficult for our loved ones to fully comprehend the suffering we endure with a chronic Lyme disease. Our lives often change drastically — confusing the important people around us because we don’t always look sick. My hope for this article is that you, our loved ones, would gain some insights into what it’s like living with a chronic illness, and find ways you can support us as we navigate this often scary situation. Here are five things we wished our loved ones knew about Lyme disease:
Lyme Disease Symptoms and Chronic Illness
1. The illness is here to stay.
A chronic illness is constantly recurring. With Lyme disease, there are ups and downs, periods of improvement and decline. For those of us living with any chronic disease, we are never truly free from it. We usually don’t discuss the day-to-day fluctuations in our symptoms because we don’t want to alarm you. You may not be aware we battle a set of invisible symptoms the world never sees.
Recovery from any illness is tricky. It’s important to remember this process takes an immense amount of time, effort and has no official timeline. Through trial and error, most of us eventually find a Lyme disease treatment strategy that yields some improvement.
2. There is no quick fix or magic pill.
We know it pains you to see us suffer through our Lyme disease symptoms. We know you would do anything to help us get well. With that being said, your suggestions to try more vitamin D, get more exercise, try new cleaning products, volunteer, see this brilliant chiropractor or doctor who cured one person of said illness is rarely ever helpful.
While we appreciate the time and effort you took to research our illnesses, the suggestions you offer (and I say this with love) are almost always too basic for where we are in our journey with a long-term health condition.
Let me explain.
We will see more doctors for Lyme than most people will see in a lifetime. We spend exorbitant amounts of money trying to get well. We investigate countless treatment options — every thing from natural therapies to medications, even ones that may seem too alternative or like medical quackery to people. We are willing to try almost anything to get better and we follow every feasible (and sometimes unconventional) lead.
We immerse ourselves in Facebook groups, Instagram, Twitter, and blogs. We communicate with people who have Lyme disease from around the globe. We ask a lot of questions to our fellow chronic illness pals. We compare treatments. We watch as some of us get better. We take notes on what seems to help and what doesn’t. We are sponges soaking up every piece of information we can get our hands on. We live and breathe the hope of getting well 24/7 – we learn there is no quick fix to getting better. Realistically, progress is a slow process.
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3. Expect our lifestyle to change.
As time goes on, a few symptoms improve, some become our new “normal” and others we get better at hiding. Our stamina, strength and ability to tolerate pain have limits. We adapt our lives, pace ourselves and cautiously allocate our energy to finish our daily activities. Sometimes, we overdo it on one day and leave nothing to spare for the next. If we are saying “no” to your invitations for family events or social outings, don’t take it personally. We want to be there, but we have already used up our energy reserves or have reached our pain threshold for that day.
4. Asking for help is a necessary life skill for us and not a weakness.
A few weeks ago, I encountered a tiny, but still terrifying, mouse in my kitchen while home alone. After a three-hour standoff with my landlord and a runaway mouse, my house was in shambles. My physical and emotional energies were quickly draining. Fighting back tears, I collapsed in an exhausted heap on my chair. The ability to finish the cleanup by myself was gone.
So, I did something I had never done before. I posted a message on Facebook asking if anyone had a couple of hours to spare on a Sunday afternoon because I needed some help. Eventually, help came in the form of three friends and a little dog. My dogs were kept occupied by a new playmate, friends mopped my floors, and the night ended with a Chipotle dinner party. Simply asking for help made a tiresome day with Lyme disease a little better.
Some of us have learned that asking for help is a sign of weakness. It’s ingrained in us that we must always manage on our own. Many of us wrestle with the reality that we have lost some of our independence. The truth is that asking for help is a life-skill necessary for us to effectively manage our Lyme. We will probably ask for assistance from you throughout our continued health challenges.
5. We value our relationships and losing them when we get sick really hurts.
Having Lyme disease is very isolating. We spend less time out and about and more time at home conserving our energy. With a spirit of creativity and persistence, our friendships and family connections need not completely slip away. We may have an illness that requires care and attention, but we find new ways to enjoy our lives.
Our relationships don’t need to be one-sided either. Please share your lives with us! We can laugh with you, cry with you, celebrate and support you. We make great friends and companions even if our activities shift from wine, parties and fancy restaurants to a cup of tea on our couch, while binge-watching Netflix.
I hope this list gives you a better understanding of what we need as we continue the fight to heal from Lyme disease and experience a better quality of life. We don’t say this enough, but we value your presence in our lives. Your support makes us stronger.
This article was first published on ProHealth.com on October 25, 2015 and was updated on September 07, 2019
Jenny Lelwica Buttaccio, OTR/L, is an occupational therapist and certified Pilates instructor whose life was transformed by Lyme disease, chronic fatigue syndrome and interstitial cystitis. She is creator of the DVD, New Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health and wellness advocate and blogger who writes about her journey on The Lyme Road as she continues to pursue her personal healing with the support of her husband and two rescue pups. You can find her on Instagram: @jenny_buttaccio or Twitter: @jennybuttaccio