This morning I woke up in pain.
I had a headache, as usual, and pain in my upper back, which has been happening more often lately. Not long later, my gut cramped badly enough that I couldn’t carry on conversation with my husband, who was talking to me about limiting the kids’ time on the Apple TV. And when I was making packed lunches, I couldn’t seem to get the lid off the new jar of pasta sauce. Every attempt made my head and back pain spike. I took deep breaths and the large handful of supplements and pharmaceuticals I take morning and evening. By the time I got back from the school bus stop, I was popping Advil and drew myself a bath with ungodly amounts of epsom salts to address my back pain.
This is a very normal day for me. I live with chronic illness. I’m currently on full disability after years of exposure to toxic mold at my workplace, which led to an avalanche of autoimmune disregulation and disease. At this point, I’ve been diagnosed with Hashimoto’s, adrenal fatigue, Raynaud’s, chronic inflammatory response syndrome (CIRS), chronic fatigue syndrome (CFS), multiple chemical sensitivity (MCS), salicylate and histamine sensitivity, and, most recently, lupus. This is on top of my normal hodge-podge of ailments like hay-fever and chronic migraines.
I could easily write an article about any one of these conditions and their affects on my life. But the nature of my diagnoses isn’t important. Because I’m sure you’re thinking of someone you know who is going through this too. Their ailments might have other names—MS, fibromyalgia, Lyme disease, IBS, RA, celiac, thyroid disease, allergies, sensitivities, or just mystery illness. But like me, these people are living with daily pain, mobility issues, difficulties eating, environmental sensitivities, fatigue, and a general inability to live their lives with freedom and wholeness.
The more I’ve learned about my illness, the more people have shared their own struggles with me. Often you wouldn’t guess that these people are ill. It’s natural to overcompensate, to push through the pain to try to have a normal life. I saw a chronic illness meme recently that really stuck: “People with chronic illness aren’t pretending to be sick. They’re actually pretending to be well.”
My doctor has a clinic for IV therapies—nutrients, antibiotics, and cutting edge alternative treatments like IV ozone. The women I’ve met there (women are disproportionately more vulnerable to chronic diseases) have given me a community around this reality.
One woman, Sarah*, wears big headphones because she’s sensitive to sound. She’s at the clinic every time I’m there. She’s young—late twenties or early thirties—with luminous pale skin and a dusting of light freckles. She’s suffering from a huge list of ailments and has a port in her chest so that the IVs go in more easily. She’s also funny, welcoming, and snarky as hell. She tells hilarious stories, like the one about her mom’s quest to a Canadian Costco for perfect yoga pants and the border agent’s incredulity. She remembers people’s birthdays. She asks me about how my vacation went, or how my last troublesome symptom is going. She happened to be in the clinic the day I got my lupus diagnosis. In a quiet moment, she asked, “How was that for you?” I started to cry. My aunt died from complications of lupus in her fifties. My grandma also had it. It was the big bad wolf in my family. And even though I was confused and afraid, I wasn’t alone in that moment.
Sarah stays positive, but she had to end a promising career as a teacher. She has a live-in boyfriend but has to stay over at her parents several times a week because they can pick her up after treatment, and too much transition is exhausting. She’s so alive, and yet her life is so truncated by her illness.
And there’s Namita*, who was affected by mold like me and now lives in an RV to avoid it. We bonded over mutual struggles with controlling family members. I watched this summer as she both stood up to her mother-in-law and dwindled into nearly nothing as her illness made her unable to eat. The last time I saw her, she was too weak for her vein to take an IV. She said she didn’t really want to be there anyway, and left. Not in a huff. I think she was just tired. She was commuting at least an hour each way to the clinic several times a week. She and her husband plan to move somewhere dry after his term in the military ends. I haven’t seen her in months, though, and I wonder if she’s ok.
Compared to these women, my ailments seem less severe. I struggle to eat, but I get enough nutrition to maintain my weight. I can’t work right now, but I don’t need caretakers. Having the IV girls in my life does more than make me grateful through comparison, though. They understand what it means to live with this reality.
They know what it’s like for the barista to talk shit about you because they think you can’t hear them with your headphones on, and they judge you for not taking them off. They know the sense of violation when an ER doctor says that you’re a head-case seeking attention simply because he does’t understand your symptoms—and now that’s on your medical history. The betrayal when a family member goes behind your back and tells your friends and relatives that your doctor is a quack and your diagnosis isn’t real. The sadness of not being able to eat at social functions, or how embarrassing it is to wear a pollution mask around people you don’t know. The heartbreak of going on a rare vacation only to discover that the AirBNB is moldy and making you violently ill. The frustration of searching for years for a diagnosis, let alone for effective treatment. The pain and loneliness when people don’t understand what you’re going through because so little is known about the illness itself.
Around our house, death has become a touchy subject. My daughter has to leave the room if there’s a show about a family who lost their mother. And, my God, those stories are everywhere. From Disney to Queer Eye to Ellen’s Greatest Night of Giveaways. My daughter talks openly about her fear that I will die. She’s recently become terrified whenever my husband and I go on a date—her separation anxiety as bad as when she was three. She’s almost ten now.
And to be honest, I think about dying a lot now too. Because even though I’m being treated, in a lot of ways I’m not getting better. And lupus can be a killer. I’m afraid of what that will mean for my family, for my unfinished work. I cry sometimes. And when our hamster died last week, I was disproportionately triggered by grief, by witnessing my children’s grief as they put a life that they loved into the ground.
Our culture is so aggressively healthy and fit right now. From Crossfit to Whole 30 to personal training apps to instagram wellness influencers. I admit to being deeply fascinated with that social media space while at the same time, I haven’t been medically okayed to work-out for a year-and-a-half. I love that there are more ways for people to be fit without joining expensive gyms or giving their money to those toxic national dieting chains. But it can often feel like I’m the little rag girl with my nose pressed to the window of a warm inviting home where the children are loved and well-fed. Because I am busting my ass to be well—to be healthy enough to start a fitness routine or try a new wellness trend. But I’m just not there yet.
The reality is that there are more and more people like me and the IV girls. You know some. The world we live in is increasingly toxic and mystery sickness, autoimmune conditions, and environmental illness are on the rise. And the medical profession, while really good at what they do know, actually doesn’t know a lot. The human body is as infinite as the cosmos, and western medicine knows about as much as we know about the universe. Really clear about Mars. Not so much about other galaxies.
The arrogance in the medical community doesn’t help. I saw a college friend who is now a medical specialist at a social gathering where I wasn’t able to eat the food. He made a point of telling me that my dietary issues and histamine sensitivity aren’t real.
“Calories in, calories out,” he said.
“So I can eat only candy every day if it’s within my daily calories?”
“Absolutely,” he said.
I was shaken. Later I sent him an email with links to peer-reviewed research on mast cell activation syndrome and histamine intolerance. He never even responded.
It’s scenarios like these that leave me feeling the rift between me and my old life. Now, children stare at me in stores because I wear a mask. Friends have gotten offended when I can’t come over for dinner. Beloved places are off limits because they harbor mold. My world has become smaller as my safe places and safe people have dwindled.
You might not see the depth of the pain the chronically ill are pushing past every day, both emotional and physical. And our limitations can be misinterpreted or even hurtful to those who think of us as normal. But just as someone confined to a wheelchair is limited, chronic illness has some harsh realities that those living with it are forced to accept. Even if you can’t see the disability, it’s there, and it’s very real.
My world has become smaller, but life has also become more authentic as the friends, family, and new sick peers who do get it allow me to be exactly who I am, limitations and all.
I think of IV girl Sarah—her compassion and curiosity. Her willingness to bear witness to my suffering. Her good humor and small kindnesses. She understands something that both well and unwell people can learn: suffering is borne best when it is borne together.
*Not their real names
J.M. RODDY is a Seattle-based freelance and fiction writer and a pursuer of whole-hearted living.