It’s Monday morning, and as I slowly bob up to the surface of consciousness from the depths of sleep, I start to feel the pain. The burning sensation in my feet. The profound ache in my bones. The stiffness in each and every joint and muscle.
In a previous life, this full-body misery might have been brought on by a late Saturday night of dancing, or an extra-long Sunday bike ride to the beach. But this is my new life, and in my new life, I greet each and every morning just like this.
For a year-and-a-half, I’ve been living with chronic Lyme disease, and each day brings its own stew of symptoms, ranging from the inconvenient to the downright intolerable. I was given the diagnosis of chronic Lyme by a doctor in New York City, based on the results of a blood test conducted by the Lyme Disease Laboratory at the Stony Brook University School of Medicine. The medical community at large does not currently agree on what this diagnosis refers to, or even that such a condition exists. My particular symptoms include crippling fatigue, bone and muscle pain and a marked decrease in cognitive function. I am not a doctor, but the affliction I suffer from is very, very real.
Up until Lyme struck me down a couple of years ago, I was a healthy, thriving 30-something with energy to spare. As a freelance writer, I spent my days juggling dozens of challenging writing assignments, then blowing off work-related steam by moving my body: I ran three times a week, went to sweaty vinyasa yoga classes four times a week and criss-crossed through my Brooklyn neighborhood on my trusty hybrid bike each and every day. As an avid cook, I spent many hours in my kitchen whipping up my own personal brand of crunchy hippie food, and I regularly invited friends over for dinner to share in the spoils.
But since contracting the stealthy, persistent Lyme bacteria from a tick bite I received in the Catskill region of New York in 2017, those activity-filled days feel like a distant dream. Instead of researching and writing articles, I lie in bed watching Netflix or listening to podcasts. Instead of running, biking and doing yoga, I manage a few gentle stretches or, if it’s a good day, a short walk around my block. Instead of cooking elaborate, multi-step meals, I chuck a bunch of ingredients into my Instant Pot and live on the leftovers for days at a time. And instead of catching up with friends over coffee, dinner or drinks, I spend almost every waking hour totally alone.
Up until Lyme struck me down a couple of years ago, I was a healthy, thriving 30-something with energy to spare.
When it became clear that my Lyme case was a serious one that would radically alter my life, limiting my abilities to work, run errands and, sometimes, to even leave the house, I expected my community of generous, in some cases lifelong friends, to rally around me, showing up at my door with healthy home-cooked food or offers to help me with my laundry and chores.
To my mind, these expectations were logical. Pre-Lyme, I was blessed by a solid group of ride-or-dies: compassionate friends like my pal since college, who generously tolerated years of freak outs related to my on-again, off-again musician hookup, and another friend whose apartment around the corner from mine was a second home where we’d regularly watch hours of PBS cooking shows and paint and collage around his huge dining room table.
I thought that these pillars of support would be there for me in my time of need. Instead, the opposite has been true: As my illness has progressed, formerly dear friends have gone absolutely MIA. Calls and texts first slowed, then stopped; even when I outright asked for favors, friends were often too absorbed in their busy, thriving lives to make time to bring me groceries or accompany me to a doctor’s appointment.
I don’t share this scenario to garner pity: My illness has allowed me to tap into deep reserves of self-reliance and inner strength that I didn’t even know I possessed. And once I got over the shocking reality of my friends’ inability to be there for me, I’ve mostly been able to make it through by drawing on my own personal fortitude.
I share my story because, through connecting with others afflicted by long-term illness, I’ve learned my experience is not at all unique.
As my illness has progressed, formerly dear friends have gone absolutely MIA.
In the chronic illness community, there’s an expression that goes, “It’s amazing how chronic illness turns friends into strangers and strangers into friends.” For me, the first part of this dictum proved true fairly early on. As my health declined and I became increasingly unable to make or keep plans with my buddies, they stopped reaching out as often, and eventually I stopped hearing from some altogether. They did not call. They did not text. They did not extend offers to help me manage an increasingly unmanageable life.
After the initial shock of having of lost access to what had been a core source of strength and support in my life, I started to contemplate what had happened, and even to reach some understanding about it. While I do believe these now-distant friends still care about me, I think it’s hard for anyone to know how to respond to such a drastic decline in health. My friends were used to the active, healthy, up-for-anything me, and they were now faced with a sick person who wasn’t improving.
In most instances of sickness, the person figures out what’s wrong, begins treatment and begins to recover. But in the case of chronic, complex diseases such as Lyme, which has many types of treatment but can in some cases leave chronic symptoms, healing can be a fraught, up-and-down process that can take years or even decades. I can imagine that for my friends, asking the question, “How are you feeling?” and continually receiving the answer of “no better” or “even worse” eventually wears them down and makes them feel bad.
If they can’t offer any suggestions for how I could feel better, then what’s left to say? Additionally, chronic Lyme is so little known and even less understood that the average healthy person just doesn’t know what the patient suffers through on a daily basis. Had I received a devastating diagnosis for a more prominent disease ― like cancer, for example ― I believe more of my friends would have a better understanding of the trials I’d be facing.
As my health declined and I became increasingly unable to make or keep plans with my buddies, they stopped reaching out as often, and eventually I stopped hearing from some altogether.
Thankfully, a few supporters have remained by my side, and by all indications, that’s where they’ll stay — no matter how long it takes me to cross the finish line of this often hellish healing journey. There’s a friend from California who calls weekly to share her latest baking projects. There’s another friend who offers to order me groceries online when I tell her I’ve been too sick to leave my house. My roommates scoop the cat litter and keep the apartment sparkling clean and never say a word about their increased household duties.
These are the people who can weather the personal discomfort they might feel when dealing with a sick person, who know how to demonstrate love and support through actions when there are no words left that can help.
As for the second part of the saying about chronic illness — that it turns strangers into friends — that one took me a little longer to figure out, but it’s no less true. For many months after becoming sick, I was resistant to my illness, each day thinking that I might just wake up from the extended nightmare and magically be back to my healthy, normal self. I refused to think of myself as “chronically ill,” and avoided Lyme communities like the plague.
But eventually, as the magnitude of my illness made itself clear, I joined the Facebook groups and also found many Lyme sufferers on Instagram. Although I haven’t met most of these people in real life, I’ve connected with a few here in the New York area, which has been a wonderful experience; they’ve become my clan.
Every single day, I check in with these stranger-friends: We see how each other is feeling, check in on the support we’re receiving on the homefront, ask if any progress is being made with treatment or simply complain about our crushing and various symptoms. These are my people now, the only ones in my life who understand what it feels like to be tired, uncomfortable and in pain every single day.
Without them, I’d be adrift, and I know that no matter what course my illness takes, I’ll be lifelong friends with some of the people I’ve “met” as a result of it. The handful of people that have stuck by me through unimaginable hardship, I now know, are my true friends — and so are the folks that populate this community of “strangers.” I hope to meet them all IRL someday.
Have a compelling first-person story you want to share? Send your story description to firstname.lastname@example.org.