Profile Series: I Never Say I'm Suffering
For Charlotte Neal, chronic illness is more complicated than just a mind or a body issue
This is part of a series of profiles focused on life with various illnesses and disabilities. If you’re interested in being profiled, feel free contact me at zoecunniffe@gmail.com or through Substack direct messages.
At the beginning of my Zoom interview with Charlotte Neal, I asked her to briefly describe the conditions she’s been diagnosed with, and she responded with, “This is gonna be long, so buckle in.”
Over the past seven years, Neal received seven different diagnoses—some which she agrees with more than others. “There are a lot of names that have been thrown at me over the years,” she says. “I feel like I'm in a constant cycle of having symptoms and trying to discover what's going on and then figuring out how to manage it. There's always something to think about, which can be quite exhausting.”
Her diagnoses range from mental health conditions like generalized anxiety disorder (GAD) and bipolar II, to chronic physical illnesses, which include fibromyalgia, polycystic ovary syndrome (PCOS), a hand tremor, and food intolerances related to an earlier diagnosis of irritable bowel syndrome (IBS), to costochondritis, a diagnosis she ignores flat-out because she’s realized her symptoms actually stem from anxiety.
Together, Neal’s conditions influence pretty much every moment of her everyday life—even just managing her medications and appointments is time-consuming enough to feel “like a full-time job” at times. As Neal explains, her PCOS causes heavy, painful periods, along with bloating that restricts her clothing options by making it painful to wear certain pants. Her tremor has sometimes prompted her hands to seize up, making it impossible to type. Her chronic pain, which is present throughout most of her body, is currently so severe it makes even light exercise challenging, while even sitting down requires a comfortable seat with a sturdy backrest. With this, she adds, “I can’t be in any position for a long period of time.”
The health issue that’s had the greatest impact, though, is Neal’s food intolerances, which make her so sick that, before being diagnosed, she ended up in the hospital three times in one week. For the past three years, Neal has eliminated wheat, dairy, eggs, and yeast from her diet, which not only severely limits what she can eat but also requires her to be aware of the ingredients in every food product she consumes. However, this changed recently when Neal discovered that IBS relief tablets ease her symptoms enough that she can actually eat what she’s intolerant to.
Now, Neal says, “I'm currently in a bit of a discovery phase of what's going on with my body.” Her chronic hip pain, which she’s lived with for the past eight years, was always attributed to her fibromyalgia—but in March, Neal learned that she was born with hip dysplasia, a condition where her hip sockets are shallower than they should be and don’t fully cover the ball of her upper thighbones, leading to dislocation. Over time, the cartilage in Neal’s hip socket tore, which caused inflammation and triggered greater trochanteric pain syndrome, which involves hip pain and tenderness.
Following her diagnosis, Neal was thrown once again into a cavalcade of X-rays and CT scans, which her doctors used to determine that surgery is the best choice for treating her hip dysplasia, but even with the initial uncertainties, she was quickly relieved knowing there was a concrete problem to point to. “I finally feel like I might be getting somewhere,” she explains.
Beginning in 2012, Neal spent seven years shuttling in and out of the hospital, where tests steadily came back showing that nothing was wrong. “That's been a really difficult thing to come to terms with,” she says, “because I know there's something wrong. Nobody knows your body better than yourself.”
This is especially exasperating because, while she’s visited many clinicians who were wonderful, others were instantly dismissive, making her feel like her concerns weren’t actually being heard. Just earlier this year, for example, an orthopedic surgeon claimed that Neal’s hip pain wasn’t severe enough. “He examined me for about twenty to thirty seconds and said, You don't need surgery,” Neal recalls. “And that was it.”
Similarly, Neal has numerous issues related to inflammation, which isn’t always detectable on bloodwork. “I think a lot of doctors are quite quick to cut you off and say that's not the issue if your bloods don't show it,” she says. “It just makes me really angry because I feel like a lot of the time women's pain is ignored and not taken as seriously as it should be… There've been multiple times where my experience was completely invalidated by the person that was supposed to be in my care.”
In 2019, Neal was finally diagnosed with fibromyalgia, a condition characterized by widespread chronic pain and tenderness, along with symptoms like fatigue and cognitive difficulties. While it’s better than having no label at all, fibromyalgia is a diagnosis of exclusion, meaning it’s applied to patients only once all other possibilities have been ruled out—and it signifies not a specific cause for patients’ symptoms but rather a lasting uncertainty.
This lack of clarity can be frustrating for many patients to cope with. “You almost want something to be there so you can pinpoint it, give yourself a bit of context, and actually learn how to manage it,” says Neal. After all, it’s likely that the fibromyalgia label is actually being applied to a large swath of different health issues rather than one discrete condition, which has made it hard to pin down effective treatments for it. It’s also notable that fibromyalgia is estimated to be about nine times more common in women than men, meaning patients’ symptoms may actually stem from female-specific health issues that the medical field lacks knowledge of because female participants have historically been excluded from clinical research.
Being diagnosed with hip dysplasia altered Neal’s experience entirely. “Your hips are so connected to everything in your body,” Neal says—and after her diagnosis, she wondered if this could be the root of all her pain, not just the pain in her hips. Since then, Neal’s doctors confirmed that her fibromyalgia symptoms are better explained by hip dysplasia, meaning the fibromyalgia label no longer applies.
“[The diagnosis] has kind of thrown my whole understanding of myself into flux,” Neal adds. On the one hand, finally getting proof that her symptoms have a tangible cause is an unbelievable relief, but at the same time, it’s infuriating that this didn’t happen earlier. “It's taken me fourteen years to understand why my body does the things it does,” says Neal. “And that pisses me off.”
Despite everything she’s been through, Neal has an impressively sunny outlook on life. “I'm a big believer in the power of positive thought,” she says. “I don't want to focus on what my limitations are… My lot is quite unfortunate because there's so much of it, but I can't change that.”
When I asked how she ended up with this cheerful perspective, she said it came with experience. “My positivity was born out of my lowest points,” she explains. For example, in 2022, Neal was packing to move out of her house when she stumbled on a journal entry from the day of her fibromyalgia diagnosis. Neal remembers this time in her life as particularly bleak—she was buried within a months-long stretch of pain, grappling with nonstop anxiety, and hoping her hands’ new inability to type wouldn’t put her career in jeopardy. But in the diary entry, Neal wasn’t lamenting her health. Instead, she wrote, “Feel very alone + scared, but determined to be well again. I can do this. I will.”
Reading this back, Neal was struck by how, even within this period of hopelessness, what emerged was not discouragement but instead a tenacity that she’s sustained ever since.
Another of these low points was in early 2018, when Neal’s symptoms sent her spiraling into unrelenting despair. “I spent three months lying on the sofa, staring at the ceiling, signed off work,” she says. “I couldn't even shower, couldn't really brush my hair. I never left the flat… And in that moment, I thought it would be easier if I just died.” At some point, Neal made the choice to get up and walk for five minutes, temporarily severing herself from this cycle of listlessness. “Five minutes became ten, ten became fifteen, and then it kind of pulled me out of that state,” she says.
Since then, Neal’s mindset has changed drastically. Instead of focusing on the obstacles created by chronic illness, she tries to direct her attention to what she sees as the often-overlooked positive aspects, or “superpowers,” that come with it: deeper empathy, heightened awareness of your body’s needs, and “the grit to just get on with it, regardless of what you're going through.”
Neal’s health issues are also the reason she created her Instagram account, @fibromyalgia_girl, where she’s built a “beautiful community” of people with fibromyalgia and other chronic illnesses. Her account’s bio reads “Serving positivity & realness,” which she does by interspersing honest depictions of the harder parts of life with fibromyalgia and proof of her enjoying life despite it. She also shares tips for others with the condition, aiming to show people that they’re not alone.
Maintaining a positive outlook doesn’t mean Neal never lets herself get upset about her health, or that she doesn’t seek help when she needs it. Really, it just means that Neal doesn’t let her symptoms command her life. “The pain in my hip is horrendous,” she says, “but I try not to devote all of my attention to that.” Around other people, she usually chooses to mask her symptoms, only talking about them when absolutely necessary. “I'm in pain every single day of my life,” she explains. “If I speak it aloud constantly, it becomes this huge controlling factor over my life.”
Unfortunately, other people are sometimes confused when Neal does reveal her symptoms, and they sometimes fail to understand why someone who outwardly appears fine suddenly needs to cancel plans. “I cannot choose what I have to do in order to be okay,” Neal says, but this doesn’t stop people from falsely perceiving her health issues as a choice.
“Maybe not being honest with people,” Neal says, “but I don't want my chronic health to be my personality.” There’s also a certain shame in disclosing her symptoms—for example, before work events, she has to provide a list of her dietary restrictions, which can feel overly revealing. “A lot of the time people don't say anything,” Neal says, “but for me, it just feels embarrassing because it's like saying, Hello, I am an ill person, here is my long list of requirements. You just feel like you're being difficult.”
Neal sees this discomfort about asking for help as inherent to chronic illness. After all, she’s learned through books like When the Body Says No and The Body Keeps the Score that physical illness serves at times as a subconscious means of expressing pent-up emotional distress. As Neal explains, this could be especially true for those with people-pleasing tendencies, who suppress their own feelings to keep others happy and end up with bottled-up emotions that seep out as pain or fatigue.
Fibromyalgia, which is linked with high levels of childhood trauma, is often seen as a physical manifestation of depression or stress. Of course, this doesn’t mean patients are simply imagining their symptoms—in fact, chronic stress and trauma can lead to everything from inflammation to altered pain signaling to disruptions in the nervous system’s stress response system.
Even so, it can be difficult to come to terms with a diagnosis that’s assumed to be psychosomatic. Patients whose symptoms genuinely stem from trauma and emotional distress face dismissal from doctors who miss the fact psychosomatic symptoms can be just as disabling as those with an organic cause. Others, meanwhile, may actually have an undiagnosed condition like Neal’s hip dysplasia—and assuming that symptoms can be explained by psychological distress can halt the medical investigations needed to diagnose this.
Neal wrestled with fibromyalgia’s assumed psychological basis in her journal entry from earlier, where she divulged her relief upon learning that her brain fog, which she’d become convinced was a sign of a brain tumor, was “nothing actually physical” after all. Even so, Neal was clearly struggling with the idea that her illness was rooted in her psyche. “I keep asking myself if it is my fault I’m sick,” she writes. “How can my mind cause such pain?”
In truth, this neat division of mental and physical illness is overly simplistic. For many patients, mental and physical health issues are indivisible from one another—and even having a known physiological cause for her symptoms doesn’t keep Neal from noticing their connections. “When I'm more stressed, everything hurts more,” Neal notes, “and if I'm stressed, I sleep less, which triggers my symptoms. It’s a vicious circle.”
She wishes the medical field did more to acknowledge this. “Doctors have been trained to look at one specific problem at a time,” she points out, “and the problem with that is it doesn't look at the person holistically. Just because someone's got shoulder pain, it doesn't mean it's a problem in their shoulder… We're whole people, not individual parts.”
Because the mind and body are so interconnected, having a positive attitude like Neal’s can actually help alleviate symptoms. Research shows that pain catastrophizing, which involves ruminating about symptoms and focusing on feelings of helplessness, is linked to worsened physical impairments for patients with fibromyalgia and other chronic pain conditions. This isn’t just because those who catastrophize prioritize avoidance of pain over continuing the activities they care about—increased attention to pain can actually amplify pain signaling in the nervous system, worsening pain sensations at a neurobiological level.
Instead of fruitlessly fighting against her body, Neal stays focused on what she can control: taking her medications and supplements, going for walks, carefully managing her diet and sleep. These habits provide a sense of choice about her health, counteracting the helplessness often caused by total reliance on a flawed medical system.
“When I'm controlling all of the things I can control, and I still have symptoms, that's fine,” Neal says. “It just is what it is.” To others with chronic illness, she recommends working to make peace with symptoms that are beyond their control rather than treating illness as an irrepressible struggle.
“I never say I'm suffering,” says Neal. “[My health] is just something I'm dealing with.”