Countless Lyme disease patients have asked me, has Lyme disease affected your relationships?
The short answer is yes.
The long answer is more nuanced. Throughout the course of my entire memoir, I showcase in detail not just how Lyme disease affected me physically and neurologically; not just how it affected my ability work and to care for myself; not just how it affected my sense of identity and self-worth; but how it affected nearly every relationship in my life, some for worse, and some for better.
Relationships are central to our lives and our well-being. I’m not just talking about romantic partnerships, though those are paramount, and can change drastically when a third party of illness unexpectedly joins a couple. In life, we rely on all kinds of relationships: with friends, with colleagues, with family, with neighbors and loose acquaintances. All of these connections, from your closest sibling to your mailman, can change when you get sick.
This is particularly true when you have Lyme and other tick-borne diseases, which come with controversy around diagnosis, treatment, and their mere existence when symptoms persist past the “standard” few weeks. Though these debates are about illnesses, not patients, it is the patients who bear their collateral damage. Lyme warriors battle not just to get well, but to get an accurate diagnosis; to get the treatment they so desperately need; and, most importantly, to be believed. They may find themselves fighting for validation from the people who are supposed to support them the most: their spouses, their family members, their doctors. These crucial relationships that in good times offer stability can shake and even crumble in sickness.
Other illnesses are challenging for patients and families, too. Dynamics between couples change when one person gets cancer. Children are affected. Extended family and friends are stressed and worried. But in general, when someone has cancer, most of the people with whom they have relationships come running to help. Fundraising sites are established. Meal trains are set up. Neighbors drop by to do errands and fold laundry. No one says, “Are you sure you really have cancer? Maybe you’re just stressed or depressed.”
Tick-borne illness puts an added strain on relationships because a foundation of belief is not always there.
I saw this dynamic play out in shifting relationships with many people in my life, first and foremost doctors. Those whom I’d always trusted to see me through illness were suddenly questioning the validity of my symptoms. I went from practitioner to practitioner, losing faith in a previously solid relationship with medical care. Eventually, I found my Lyme Literate Medical Doctor (LLMD), who not only accurately diagnosed and effectively treated my illnesses, but offered compassion and validation when I needed it the most. I added other practitioners to my medical care team who had the same bedside manner as my LLMD. Doctors who questioned my diagnosis—including those whose specialty had no connection to Lyme, such as my OB-GYN and my dermatologist—had to be cut from that team and replaced.
My relationships with my friends, already strong before I got sick, only strengthened during my years of convalescence. Not living with me but talking with me often, they were able to offer stalwart support without my illness affecting their day-to-day lives. They believed my illness, and they believed in me.
That doesn’t mean our friendships didn’t change, though. For one, they had to process through their own feelings of what it was like to have a friend get sick. Moreover, they—and I—had to learn that the even though I couldn’t do some of the things we used to do together, I was still the same person. My best friends found ways to work with my needs. When I no longer could attend New Year’s Eve parties, they’d caravan to visit me the next day. When I couldn’t ski, they sent me videos of themselves on the slopes. Those who didn’t understand why I couldn’t do these activities—or worse, who expected me to and were upset when I said no—quickly fell by the wayside.
When you get sick, there will always be a few people who just don’t get it. Some of them don’t want to believe that they, too could someday get sick without warning. They’ll stop calling, or will tell you it’s too difficult when you ask for help, or will make comments like, “Aren’t you over that yet?” When you’re sick, you need to evaluate which relationships are most crucial to keep intact, and which people are supporting you in the way you would them if the situation were reversed. The others simply need to be cut from your life. You don’t have time or energy for those people.
Of course, there are those with whom you are in more permanent relationship, like your spouse or your family, who you want to try to work with to help them understand your situation. You also want to be compassionate about how your illness affects them. You aren’t just going to jettison them when the going gets tough, though you may need to if lack of support continues to a toxic level. Chronic illness can destroy relationships, but it doesn’t have to, as long as both parties are willing to accept the illness and to work together to negotiate how it plays a role in the relationship. My own family’s understanding of tick-borne disease, and of what it means to have a chronic illness, changed dramatically over time. As their understanding of my illnesses and my needs improved, and as I better understood the challenges placed on them, so our relationships improved, too.
The two most important relationships that had to change before any others could were my relationship with myself, and my relationship with my illnesses. For years I blamed myself for being sick. I wrestled with shame and guilt for not being able to support myself. I hated Lyme disease and my co-infections babesiosis, ehrlichiosis, and possible bartonella. I couldn’t wait to get over these diseases and get back to life. It took a complete relapse, a serious reckoning with what I used to consider “restrictions,” and a reframed mindset for me to decide to forge a loving relationship with my illnesses rather than continue to try to break up with them.
I also had to reframe how I saw myself. I had to work hard to recognize my own self-worth, even when I was bedridden. Once I was in better relationship with myself, my health improved, too.
All relationships are a two-way street. Now that Lyme disease has walked onto that street, where do you and the people you’re in relationship with meet? Do they come up to you and offer their hand? Do they walk the other way? How do each of you treat the presence of Lyme disease? Negotiating these factors so that your needs and someone else’s are met makes for a better relationship, and a smoother journey down the road of illness.
The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir, One Tick Stopped the Clock, is forthcoming from Legacy Book Press in September 2024. Ten percent of proceeds from the book will go to Global Lyme Alliance. Contact her via email below.