Lewis Capaldi is Taking a Break. Why Can’t I?

Singer-songwriter-musician Lewis Capaldi, a white man in his 20s, wears a black jacket and pants and a white T-shirt as he stands in front of a microphone with an acoustic guitar wrapped around his neck, hanging across his chest. His eyes are closed and his lips are slightly parted as he sings into the mic.

On June 27th, 2023 Lewis Capaldi officially announced his hiatus from touring, citing “the impact of Tourette Syndrome” as part of his decision, one discussed in his award-winning documentary How I’m Feeling Now. He did not take this decision lightly, empathizing with fans about how disappointing it is to look forward to a tour that’s been postponed—and the costs associated with it.

There’s no doubt that Capaldi loves touring, his fans, and the ability to play music in front of thousands each night. As a fellow Touretter, I’m thrilled that there is both representation of Tourette’s and the need for rest from such an international star. But I most resonate with the final part of his Instagram statement, which apologizes for rest while simultaneously justifying it: “I’m so incredibly sorry to everyone who had planned to come to a show before the end of the year but I need to feel well to perform at the standard you all deserve.”

While I’ve hardly achieved the same elevated status as fellow Touretters like Capaldi, Billie Eilish, Howie Mandel, Steve Wallace, and others, I’ve achieved a lot in my life. I’ve been Key Club President, a foster for kittens, a published writer, musician, and so much more. This confuses people when I do desire rest.

There are days when I can indulge in spontaneous plans. On other days, I need to reschedule advanced ones. It’s all up to my body, which cannot be tamed on a whim. During times of stress it can flare up, waxing and waning as it pleases.

But you were fine yesterday; you’ve pushed through it before, I think, an echo of others’ sentiments when I cancel or postpone plans. It also shapes others’ decisions about whether or not to include me at all. Their explanation is usually, “I didn’t think you’d want to come” or “It would be too stressful for you.”

This leads to shame, guilt, and feeling excluded, just for being in an unruly body; requests to forgo my comfort and embrace pain for the sake of others’ needs are seen as the “right” thing to do. While there are many times wherein I believe in pushing through (if possible), like an important celebration or funeral, it can be stressful on the body if the brain decides it’s a “tic-ier” day. It often results in having to take muscle relaxers, sedatives, and pain relievers to get back to a manageable spot.

Yet I still feel the need to apologize.

Many with Tourette Syndrome are encouraged to push past these difficulties, which is why you don’t often see people disclose their Tourette’s. As a child, my neurologist focused on controlling and eliminating the tics he believed were temporary…and my fault. He blamed chocolate, video games, SpongeBob, anything but a disability. So the masking began—and worked—and continued throughout my childhood and teen years. I was an honor roll student, involved in many service clubs and honor societies. I hung out with friends, pushing through the discomfort for the most part and making up an elaborate excuse when I couldn’t.

I believed my tics were a personal failure…until my late diagnosis at 22, long after my tics “should” have left. I had to confront the fact that rest was not a privilege, yet the guilt of canceling or modifying plans remained.

Like many others in the world, doomscrolling TikTok is a favorite pastime. User Vermin and the Rats (with a green pixie cut I wish I could pull off) confronts me with truths: “Is it possible you tie your sense of self-worth to your productivity and your ability to help others, and that’s why you feel so guilty when you’re not able to be productive and you have to rest? That you’ve been masking your disabilities for so long, that you genuinely don’t know how to gauge what your needs are?”

It’s Just Nerves: Notes on a Disability by Kelly Davio is an essay collection chronicling the author’s experience as a disabled person in the 21st century. She writes, “If you are going to disclose your illness, our culture tells us, you had better do it in a way as to make other people feel gratitude for their own good health, to take advantage of their robust bodies….” My addition? If you disclose your illness, you better be a superhuman of sorts. A gold-winning athlete. A wildly successful musical artist. Even then, you’ll still need to apologize for the need to rest. After all, your exceptionalism is waning, which is unacceptable.

In many programs across the United States, services for disabled students are referred to as ”Exceptional Education.” If you happen to be “gifted” AND disabled, you’re labeled as “Twice Exceptional.” Disability, as mainstream culture understands it, cannot inherently be associated with anything good at all; it must be paired with something to “make” it okay. In this case, being exceptional is the only acceptable way to exist in a disabled body. Don’t believe me? Just look at inspiration porn, or the objectification of disabled people to make able-bodied people feel better about their own lives.

When people respond to me with “That’s okay” or “You’re still such a capable woman” after explaining how my Tourette’s works, I get frustrated. Of course it’s okay. I never said anything about my capabilities. I never apologized for my existence.

It’s hard to correct them outright. I’ve even had to correct myself when I’ve thought or said something similar to people with other disabilities. It’s hardwired into so many brains that disability cannot coincide with anything neutral or good, even if you’ve lived it. The only way out of it is to rest boldly. After all, one of the primary tenets of disability justice is rest. No maybes, buts, ifs, or sorries. Just rest.

To practice, I’ve been typing out and removing apologies from my requests to postpone or skip events. I often still leave them out of fear or guilt, but I’m slowly improving my self-advocacy, simply taking the rest I’m allowed to take. I can no longer feel the need to “make up” for the way I exist “proving” exceptionality.

Gretchen Gales (she/her) writes…a lot. After realizing becoming a veterinarian meant being good at math, she pursued writing and teaching as a career instead. You can find more of her written and artsy stuff at www.writinggales.com.

Chronic Inflammatory Response Syndrome: An Unnecessarily Arduous Journey to A Rare Diagnosis

A patient, a blonde white woman wearing a dark top with a white top underneath, holds her head in pain while a fair-skinned doctor, face unseen, holds a clipboard while wearing a white lab coat with a stethoscope around their neck.

As I sat in the waiting room of my doctor’s office, a wave of hopelessness washed over me. It was my fourth visit that month; I was beginning to feel desperate and invisible. I’d been experiencing strange symptoms for months—fainting spells, headaches, vertigo, flu-like symptoms, and excessive thirst—and none of the doctors I’d seen could give me a concrete answer.

At the time, I was working at a startup in Baltimore. I chalked it up to too much coffee and too little sleep. Over time, the symptoms got progressively worse. I would go to work having pounded ibuprofen, coffee, and anxiety medication. Because I presented as “normal,” any time that I mentioned needing to rest or take some time to look after my health, everyone from doctors to friends either directly or indirectly told me that I was simply bad at stress management and everything was all in my head.

I felt hopeless. My symptoms were impacting my ability to work and enjoy life, but no one seemed to take me seriously. Doctors would do blood work, note that it all came back normal, and say “Let’s see if things have improved in six months” without prescribing me anything except for occasional nausea or anxiety meds.

Eventually, I quit my stressful startup job, thinking that perhaps my symptoms would go away if I could achieve a better work-life balance. Spoiler alert: they did not. As time went on, I started developing sensitivities to many of my favorite foods and drinks. After eating them, my light-headedness and excessive thirst would increase significantly. I began tracking both my food intake and my symptoms and, after finding a near-perfect correlation between fainting and three different foods and beverages, I went to an allergist. She promptly told me that I’d made it all up and needed to work on my food phobias.

I had to quit two more jobs due to how much my symptoms impacted my ability to work. Last year, things crescendoed. My excessive thirst led me to drink so much water that I was hospitalized for hyponatremia (low blood sodium) and my vertigo and headaches became unbearable. I also began to experience overwhelming brain fog that prevented me from getting anything done or learning anything of substance while working.

After ruling out diabetes, my doctors simply told me to drink less water; the thirst was probably all in my head. I spent hours each day on the phone calling specialist after specialist asking them to see me, following up on test results, having my medical records sent to other facilities, and handling all of the other logistics of seeking treatment for my unidentified illness. I also began diligently documenting every aspect of my daily life. This comprehensive log—detailing what I ate, drank, did, and the symptoms I experienced—became crucial. Before each doctor’s visit, I’d analyze and share key highlights from the data to ensure that I wouldn’t waste time rehashing old details and to preemptively address any simplistic theories they might want to revisit.

I had all but given up when I stumbled upon a health podcast in which the host is told by a specialist that she is demonstrating hallmark symptoms of Chronic Inflammatory Response Syndrome (CIRS). She was the first non-diabetic person who I’d heard mention that she experienced excessive thirst as a symptom and her other symptoms matched mine almost completely. Excitedly, I began googling the condition to learn more, despite having been told over and over by well-meaning but misguided friends, medical care providers, and family that I should avoid self-diagnosing or reading too much about illnesses online. I was tired of letting the “experts” mishandle my health and my life.

I learned that CIRS is a chronic condition that causes inflammation in the brain and can eventually lead to other autoimmune diseases and neurodegenerative disorders. It often develops when someone who is genetically susceptible to the types of molds and bacteria that are prevalent in water-damaged buildings gets exposed to those pathogens. Because CIRS patients are unable to handle that exposure the way that the rest of the population can, they get sicker and sicker unless they get treatment.

Common CIRS symptoms include flu-like symptoms, headaches, brain fog, blurry vision, light-headedness, excessive thirst, and weight gain. If left untreated, the brain gets so inflamed that many begin to experience dementia-like symptoms. Additionally, CIRS can even cause or exacerbate pre-existing anxiety.

I found a specialist who works with Dr. Andrew Heyman, a leading researcher on CIRS. After several weeks of extensive blood work, brain scans, and other testing, the diagnosis was official: I had CIRS. Knowing how serious CIRS is, I am glad that I listened to my gut. I only wish that I had been more insistent that it wasn’t just in my head so that I could’ve received a diagnosis sooner.

Looking back, I realized that my experience is not unique. Disabled individuals often struggle to have our symptoms taken seriously by the medical community. I had to fight for years to get the proper diagnosis and treatment and it was only because I stumbled upon a podcast that I finally found some answers. According to studies by Dr. Heyman, over 20% of the population is genetically susceptible to the disease, although the gene has to be activated by a precipitating event for the individual to develop CIRS. I wonder how many people are silently suffering with the disease that I am now being treated for.

The struggles that disabled individuals face extend beyond the medical community. We also face discrimination in the workplace and in our everyday lives. As someone who experienced CIRS as a result of a water-damaged work and home environment, I feel that it’s important to speak out about workplace and tenant rights and safety as they relate to disabilities.

The repeated dismissals I faced aren’t merely personal grievances; they expose a systemic failing. People with disabilities, chronic illnesses, and other serious medical conditions shouldn’t have to sit on waitlists and fight to be taken seriously when they finally do get to see a doctor. As infuriating as my experience was, my education and majority ethnic identity made it easier for me to rebut doctors’ dismissals, flooding them with data, carefully reasoned arguments, and ultimately demands to be treated better.

A system that prioritizes only those who can advocate for themselves creates barriers for the less privileged and for those with intersecting marginalized identities. Whether inadvertent or by design, the way that the healthcare system works today falls short of respecting human dignity, to the detriment of society. Every individual deserves a voice, care, and understanding. We need more than hope. We need actionable change that ensures every person’s health and well-being is genuinely prioritized.

Mia Tompson (she/her) is a graduate student with a chronic illness. She lives in Boston, and when she is not studying or working, she enjoys baking, photography, and swimming.