My mother, who is 70, takes only one pill a day. I am 30, and because of all the pills I take, my bag sounds like a rainstick.
I have a primary care doctor, a rheumatologist, a pain management doctor, a gastroenterologist, an acupuncturist, a massage therapist, a physical therapist, a talk therapist, a psychiatrist and a rectal surgeon — all of whom I started to see with regularity over the past two years or so. Even the rectal surgeon.
Acquiring this endless buffet of specialists started about five years ago, when I was trying to narrow down a diagnosis for my worsening gastrointestinal issues. I’ve always had a “weak stomach,” as my mother calls it, but in 2016, I couldn’t leave the house without consulting the spreadsheet of Starbucks bathroom codes I had started to log. I wish that were a joke.
I became extremely depressed and started to isolate before isolation became in vogue. I finally went to a GI doctor, and a year later, after various tests, physical examinations and checkups, I tested positive for SIBO, which, to my surprise, was not a popular wireless service provider in Norway, but an overgrowth of bacteria in my small intestine. This condition was exacerbated ― as confirmed by an endoscopy and a colonoscopy ― by irritable bowel syndrome.
While all of this was happening, I willfully ignored the onset of neuropathic pain that finally started to surface from the nesting doll of various traumas I experienced from 2014 to 2017. A toxic relationship, getting stuck in my burning apartment building, my father’s cancer diagnosis, among other psychological wounds, festered below the emotional surface, resulting in head-to-toe pain that I tried to elude for almost four years because I didn’t want to accept the reality that it wasn’t something I could outrun — that it was as inseparable from me as my own shadow.
Whether I have pain day to day isn’t ever the question ― it’s more a matter of how much I have. Some days it’s relatively manageable, a dull local ache that might appear on the right side of my face, or my arms, or my legs. Some days it’s global: My entire body feels like it’s being squeezed by the jaws of life. Sometimes I wake up in the middle of the night because my legs spasm. My brain fog frequently pulls the rug out from beneath my feet, rendering me unproductive or even more socially inept than I am to begin with. It often causes me to forget what I’m saying midsentence or forget big and small things entirely. This kind of fatigue is brutal, immune to a good night’s sleep or even the strongest of cold brews.
“An aunt once told me that my chronic pain was not natural for someone my age ― that I should see a nutritionist and have I thought about trying yoga? Moving through the world constantly justifying myself became as lonely, depressing and overwhelming as living with chronic illness itself.”
After years of living like this, I finally — at the behest of my therapist — made an appointment with a pain management doctor. She performed a physical examination, which included exerting pressure onto what are called “tender points,” in addition to ordering an MRI, a number of X-rays and some bloodwork. She also referred me to a rheumatologist to rule out any rheumatological issues. After everything came back “normal” (meaning whatever they were testing for was not detected) and the tests for lupus, Lyme disease, a vitamin deficiency and countless other conditions returned negative, my care team agreed on a diagnosis: fibromyalgia.
At first, it was a relief to finally have a name for what had, up until that point, either been brushed off as something that could easily be remedied with diet and exercise, or just dismissed entirely. It was validating to know that it wasn’t just “in my head,” or a result of not stretching or hydrating enough. Equipped with this knowledge and a care plan tailored to my specific needs by a team of medical professionals I trusted, I was ready to begin taking the first steps toward acceptance of the truth: that the “old me” was never coming back and this was my new reality.
But coming out of the chronic closet came with a new set of challenges: I was constantly questioned, challenged and told, in more ways than one, some variation of “you’re too young to be sick” by friends, colleagues and family members. One of my former bosses, who was in their mid- to late-60s, once huffed in response when I asked to leave early for another doctor’s appointment and remarked that I go to more doctor’s appointments than they do, before begrudgingly accepting my request. An aunt once told me that my chronic pain was not natural for someone my age ― that I should see a nutritionist and have I thought about trying yoga? Moving through the world constantly justifying myself became as lonely, depressing and overwhelming as living with chronic illness itself.
Communicating the complex nature of chronic illness to others is almost as taxing as trying to reconfigure your life to accommodate something constantly hellbent on thwarting it. This is why so many of us choose to say nothing at all, or just find it easier to come up with excuses to stay at home instead of suffering in silence around others. The harmful ideology that “youth is health” only compounds the adversity and discomfort many of us contend with on a daily basis, and it takes a tremendous toll on our mental health.
A day at the beach, a daytrip somewhere hours away, even something as innocuous as going out to dinner and seeing where the night takes you — all plausible items on the social itinerary for an able-bodied young person — are activities riddled with booby traps for someone like me, a chronically ill 30-year-old whose care regimen requires a lot of thought and attention. Making plans with friends already takes a significant amount of energy out of me. Anxiety replaces excitement because I don’t know how I’m going to feel that day or what my energy level will be. I never know if I’m going to need to forgo certain activities, or cancel altogether, and all of the variables I have to consider slowly sap me of any enthusiasm I had to begin with. I’m mortified that those in my company — friends both new and old — will see me as high-maintenance, an inconvenience or worse, dead weight to drag around while they try to enjoy something simple like strolling through a field of tulips at a botanical garden. It’s no surprise that many of us develop a proclivity toward isolation.
Withdrawing from the world around me started when I noticed that I couldn’t keep up with those around me. I started turning down invitations for anything outside of my comfort zone — a weekend in Vegas, an all-day music festival, going upstate for a holiday — and instead kept my social activity relegated to things I could easily cut short in case any of my symptoms started to flare up: coffee dates, drinks, dinner here and there. Afterward I’d come home and scroll through Instagram, watching as my other friends traveled the world, ate the local cuisine with reckless abandon ― not worrying about an ingredient potentially aggravating their delicate digestive system ― and saw the sights that I was quickly losing hope that I would see in this lifetime. My world shrunk to the dimensions of my apartment and resulted in the kind of loneliness that the chronically ill know too well.
I often feel like I’m the only one going through what I’m going through; and in some cases that is the truth. Many of my go-getting friends, the same ones asking me if I wanted to hop on a plane to Mexico City or participate in any sort of nature-related activity, don’t live with fibromyalgia — or any sort of chronic condition — at least not to my knowledge.
My struggle is not like having a headache where if you say your head hurts, you’re told to take some Advil or go lie down, because pretty much everyone, at one point or another, has gotten a headache and understands the problem-solving involved. When someone with chronic pain says they’re in head-to-toe pain, they’re told to try this cleanse. Or turmeric. Or to get a standing desk. Or this. Or that.
“For many, it costs too much to be sick, which makes the support — including how we think, consider and practice caregiving — from friends, family and, eventually and hopefully, society at large, all the more paramount to our physical and mental health.”
On top of fighting to be believed, finding adequate care, and trying to just be without judgment or unsolicited help that, more times than not, does not help, those of us living with chronic illness, before all else, have to find a way to coexist with the symptoms that frequently make daily life overwhelming. This is the overarching truth of my reality, but it’s the small things — like being told that I’m “making things out to be worse than they are,” that I’m “not being positive enough,” or being asked when I’m going to get “better” — that can hurt more than my fibromyalgia.
The truth is, most of us are not going to “get better.” There isn’t a cure for fibromyalgia, or for many chronic illnesses, at least not yet. In the meantime, the only thing we can do is try to find ways of living sustainable day-to-day lives, which means making room for the chronic conditions we grapple with, whether they’re physical, cognitive or both. But we can’t do so without taking into consideration all of the things that also require our time and energy like work, raising children, taking care of sick family members, and anyone or anything else that depends on us. And that’s assuming health insurance is part of the equation.
According to the Centers for Disease Control and Prevention, 31.1 million people in the U.S. reported not having health insurance between January and June 2021. Imagine how many folks are trying to keep their lights on, keep their families safe and healthy, and show up for one thing or another, all while struggling with something that is often called an “invisible disability” (because of the misconception that if you can’t see it, it doesn’t exist) ― all while being prevented from accessing adequate health services for a plethora of reasons including the rising cost of health care, fewer employers offering dependable insurance, public program cutbacks, and numerous other socioeconomic factors that stem from structural inequality. For many, it costs too much to be sick, which makes the support — including how we think, consider and practice caregiving — from friends, family and, eventually and hopefully, society at large, all the more paramount to our physical and mental health.
I’m hoping that by being more open about my experience, I’m able to reach my able-bodied friends and family in a way that I haven’t been able to before. I don’t need anyone to put me in contact with their shaman; I just need an ice pack. I am not looking for tips or solutions, I am looking for advocacy. I am looking for interest, curiosity — I am more than happy to explain the conditions I live with, which would only make my relationships stronger, and I’m willing to bet others who are dealing with similar things as me feel the same way. Most of all, I’m looking for support rooted in patience, understanding and compassion.
Greg Mania is the author of the memoir “Born to Be Public.” Sign up for his newsletter SOS (Save Our Serotonin).
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