The sharp pain bubbling up on the left side of Kiki’s head is an omen of what’s to come: an immediate race against time to find a safe spot before her body begins to seize.

These episodes, which doctors misdiagnosed as epileptic seizures for over two decades, typically begin with triggers — most of which Kiki has now figured out. “I have to stay away from shows or media with sexual violence,” she explains. “Learning my triggers – what’s happening and why – has been so helpful in managing my condition.” 

Last year, a single question from a new neurologist unraveled 20 years of searching for answers: “Have you ever experienced trauma?” 

“I told him that yes, I was a victim of childhood sexual abuse,” she says. The question – so simple, yet never before asked – made everything suddenly click for the physician. Kiki’s seizures weren’t epileptic at all. 

Instead, the doctor diagnosed her with psychogenic non-epileptic seizures (PNES), a poorly-understood condition where psychological trauma manifests in bodily reactions. When Kiki experiences severe stress or triggers, “I experience seizure-like episodes. I can’t speak, but I can see what’s going on around me.” 

Kiki’s PNES diagnosis came after years upon years of being prescribed powerful anti-epileptic medications that altered her personality, disrupted her development, and failed to address the underlying cause. 

This oversight proved devastating – but is unfortunately not unique. When Kiki faced an aggressive breast cancer diagnosis at 34 years old, she encountered the same systemic failures in healthcare: rushed decisions, withheld information, racial bias, and an establishment focused more on maintaining standard protocols than addressing individual patient needs. 

Kiki’s experiences reveal the critical gaps in American healthcare that disproportionately impact women of color and those who have survived trauma. But these gaps need to be addressed, and soon — otherwise, we’ll continue to see worse health outcomes and deepening disparities across the healthcare system. 

The convergence of trauma, racial bias, and medical gaslighting represents a critical failure point in modern healthcare. And Kiki knows better than anyone: when medicine contains persistent blind spots around these points, those being treated are seen as a collection of symptoms rather than whole people. This systemic oversight carries devastating human costs. 

By sharing her story with Rareatives, Kiki hopes not only to address the trauma perpetuated in our current healthcare system, but also to provide hope to others on their own journey. To teach them that, at the end of the day, you will be your best advocate. 

The Ghost in Medicine: Healthcare’s Failure to Recognize Trauma

Psychogenic non-epileptic seizures represent one of medicine’s most frequently misdiagnosed conditions, affecting up to 20-30% of patients referred to epilepsy centers for intractable seizures. 

That statistic alone should raise alarm bells: thousands of patients annually are receiving incorrect treatments for a condition they don’t have while their underlying condition remains completely unaddressed. 

In Kiki’s case, she was diagnosed with epilepsy and first went on anti-epileptic treatments at ten years old. “It’s very scary to have seizures growing up,” she tells me. 

“When you’re young, you don’t really understand what’s happening. Your doctor can’t give you an explanation, but that’s what they’re there for, right? I was left wondering why I wasn’t being helped. Why none of the medications worked.” 

Keppra, Depakote, and more medication she can’t remember the name of — Kiki’s treatment plan became a seemingly endless cycle of increasing doses and new drug combinations. As she reflects, she says, “I didn’t feel like myself, especially while on Depakote.” 

Medication cycling is common among individuals with PNES, who often spend years on various anti-epileptic drugs before receiving correct diagnoses. However, anti-seizure medications have been purported to cause more harm than good in these individuals. 

Critical Development

For younger individuals like Kiki, PNES misdiagnoses often occur during periods of critical development, which shapes their relationship with friends and family, healthcare, and their understanding of their own body. 

The constant fear of having an episode during social events isolated Kiki from peers during her formative years. “What if I’m at a sleepover and this happens, and then everyone is going to look at me? I felt very separate from my friends,” she remembers thinking. 

Medical mismanagement can compound social and emotional challenges for young patients. Outside of general fears around friends and family, Kiki dealt with something very common in the PNES community: the stigma or belief from medical professionals that this is all in their heads. That these seizures are being faked or misrepresented in some way. 

“Sometimes the episodes would be very severe,” Kiki explains. “By the time I went to the hospital, tests wouldn’t show anything as the episode was over. My mom had the idea to record one, and every neurologist said I was just having seizures. There were common things happening during the episodes – I’d be very upset about something, or watch something traumatic – but I never put that together. And those questions were never asked to me.” 

The burden on Kiki’s shoulders felt heavier and heavier by the day. She felt like she was becoming a nuisance to her family. The episodes kept happening; the medication failed to make a dent on symptoms. 

“What else could I do?” she asks now, a twinge of frustration in her voice. “In a sense, I was depressed – I was a young girl trying to figure out and navigate this, but I didn’t feel like I was getting the help or medication I needed.” 

The Mental Effects of Trauma

As Kiki grappled with her health, alongside feelings of depression, doctors suggested that she try therapy. But, similarly, therapy seemed to avoid talks of trauma. 

“She didn’t ask me the hard questions,” Kiki says. “Nobody was trying to figure out: why do I feel the way I feel? When I was younger, I had actually talked about my abuse and it was swept under the rug. I learned from an early age that it wasn’t safe to talk about these things because nothing would happen. I didn’t feel like I would be believed. But I needed the therapist to open the door here, to ask those questions and show me that I could have been.” 

Her personality began to shift: a buildup of the frustration of not understanding what was happening, and what had happened in her past that she didn’t know how to freely express. “At some point, I was bound to just combust,” she tells me. “I felt altered; it altered my state, it altered who I was.” 

And, in a way, she did. Gone was the quiet girl who didn’t feel like anybody would listen to her. Kiki was going to make them listen. She became combative and outspoken. Refused to tolerate the way things were going. But that only landed her another misdiagnosis — bipolar disorder — that only her most recent doctor confirmed she doesn’t have. 

“I’ve become more patient now that I’m a parent, but there are certain things and behaviors I cannot be around,” Kiki says. “I have to protect my peace at all costs. And if that means removing myself from situations, even with family, I’ll do it.” 

Thinking back about her experiences, Kiki lets out a low sigh. As a self-proclaimed “momma bear” of two girls, Kiki has drawn on what she went through to make sure her own kids are okay. But she also wants to reinforce the importance of listening to what children have to say, especially about topics such as childhood sexual abuse: 

“I have to protect my kids at all costs. If my girls came to me and told me they had been abused, I can assure you that it would be a different story. I have to protect my kids, and I didn’t get that. When a child comes to you and is telling you this, you have to believe them. And you have to do something that shows them – we’re here to protect you. If it’s swept under the rug because it’s embarrassing to the child, what does that do? It does a lot more damage than confronting those people.

Plus, from a medical standpoint, we need doctors to ask questions. Children don’t know what they can or can’t say, and many feel shame about abuse. Shame about telling their truth, which is not helpful. There needs to be a better approach to reach these children.” 

The Physical Effects of Trauma

Research has increasingly found that trauma’s physical manifestations extend far beyond PNES. Studies have documented clear links between childhood trauma and higher rates of chronic illnesses, from autoimmune disorders and diabetes to cardiovascular disease.

The body keeps score, as trauma experts often note. Yet medical education and practice still maintain an artificial and harmful divide between mental and physical health. 

This disconnect, especially in medical education and training, has real consequences. Despite mounting evidence of trauma’s physical impacts, standard medical training dedicates minimal time to trauma recognition and treatment. Our healthcare system is ill-equipped to recognize or address the complex interplay between psychological trauma and physical health.

The challenge of recognizing PNES specifically highlights broader systemic issues in how medicine approaches trauma. Many physicians recognize PNES as existing somewhere between neurology and psychiatry, which requires providers to bridge the divides of traditional specialties. But our medical system still remains siloed. Crossing these boundaries is essentially for conditions like PNES that don’t fall into established diagnostic categories. 

Fighting Breast Cancer

Throughout Kiki’s battle to better understand and manage her epileptic episodes, she also found herself face-to-face with another formidable health foe after being diagnosed with breast cancer on October 1, 2019. 

“I was diagnosed with invasive ductal carcinoma,” Kiki says, “but what was weird was that my older sister was also battling breast cancer, albeit a different type. Genetic testing showed that I had an RNA mutation, but she had no mutated genes.” 

The survival rate for invasive ductal carcinoma is fairly high. At first, although hearing “cancer” can be scary, Kiki felt okay about the treatment process and her prognosis. But the pressure to make rapid treatment decisions without complete information represents another critical failure point in healthcare. 

For example, Kiki wasn’t informed about the possibility of “staying flat” (i.e. not having any implants put in after a double mastectomy) until complications from tissue expanders — Kiki developed sepsis — led to emergency surgery. 

“When we were discussing my options, I’m suddenly being told about fat grafting, deep flaps, or the option to stay flat,” Kiki says. “I put my body through all of this trauma, but would not have chosen that if I had been given the information to make an informed decision. Doctors should be honest about options, rather than jumping to the conclusion that I want to keep my breasts because that’s what society thinks I should look like. I’m still beautiful. And society doesn’t live with breast cancer, I do.” 

Once again, Kiki gained a first-hand look into the gaps in cancer care — and later, into cancer recovery. “Doctors don’t talk about the sexual aspect of breast cancer’s aftermath,” she explains. “Losing libido, or not feeling happy in your new body, especially if you’re flat. These aspects receive minimal attention, but profoundly affect your life and your recovery.” 

The medical establishment’s failure to address these concerns comprehensively reflects a narrow focus on survival metrics at the expense of holistic patient wellbeing. Yet even when Kiki sought out help – when doctors told her to find a therapist for depression – she was turned away, told that she had to find her own. 

She tells me, “When someone is battling cancer and dealing with everything that comes with it, the cancer center should provide more for the treatment plan. A therapist, a nutritionist, a dietician, a physical therapist – these should all be offered to patients so we’re not out here on our own.” 

The Social Challenges of Living with Cancer

When thinking about cancer, many people often focus on the physical effects – but a cancer diagnosis can also come with significant mental, emotional, and social impacts. For Kiki, one of the worst elements was “cancer ghosting” – her best friend stopped speaking to her. This painful phenomenon is common for people with cancer, with one licensed social worker suggesting that 90% of people with cancer experience a friend, family member, or loved one pulling back or disappearing. 

“That was hard to navigate in the beginning. It hurt a lot more than being diagnosed,” Kiki says quietly. “But I’ve learned that I need to let go and focus on my healing.” 

Kiki has also dealt with invasive, and often hurtful, questions and comments from others – many of which perpetuate myths associated with breast cancer:

• Oh, you’re too young for breast cancer: “Obviously I’m not.” 
• You don’t look like you have cancer: “Well, what does that look like? Cancer doesn’t mean that you’re just bald and frail-looking. Just because I have hair doesn’t mean I’m not going through a lot.” 
• You look good for someone going through cancer: “Thanks, I guess? Again, just because I have hair doesn’t mean I’m not going through a lot.”
• Why did you take off both breasts if the cancer was only in one?: “Either you’re going to support me or you won’t. I don’t need to explain what I did to anybody. I don’t need your approval or acceptance.” 

Racial Bias and Medical Gaslighting

The healthcare system displays a systemic and historical pattern of medical skepticism towards patients of color. Research consistently demonstrates that racial bias affects every level of healthcare delivery, from pain assessment to treatment options. 

Black patients routinely receive different, and often inferior, care compared to white patients – even when presenting with identical symptoms. These disparities persist even when controlling for factors like income, education, or insurance status. At the end of the day, our healthcare delivery systems include deeply embedded racism. 

Unfortunately, Kiki has experienced this bias in her own medical care. As a trained chef, Kiki uses her hands quite often. But her breast cancer treatment led to pain and a loss of feeling in her hands and arms. 

“I knew there might be nerve damage due to the surgeries, but my doctor was unwilling to consider neuropathy since I was outside of a ‘traditional’ time frame,” shares Kiki. “Sure, there’s a typical time frame but everybody is different. Everyone’s bodies and healing are different, so don’t put me in a category of ‘typical.’” 

An EEG and skin biopsy found that Kiki had small fiber neuropathy – a finding that both validated and frustrated her. “This is why people are scared to ask questions or tell doctors what they’re experiencing, because we’re treated like hypochondriacs. Believe me, I don’t want to keep coming to the doctor. I don’t have that money,” she says.

Then, powerfully, she adds, “Listen to your patients. You went to school to learn about this, but I am physically experiencing it. You cannot tell me what I am or am not experiencing.” 

The compounded trauma of medical gaslighting — having one’s symptoms repeatedly dismissed or minimized — creates a devastating cycle. Patients learn to doubt their experiences or delay seeking care, both of which can lead to worse health outcomes. The pattern of dismissal and disbelief also mirrors broader patterns of discounting the experiences of women of color. 

No instance of racial bias has been so egregious as when Kiki sought out help from her oncologist for superficial blood clots in her arm. After being sent to the hospital, Kiki had a follow-up visit with her oncologist. Kiki mentioned her concern that the blood clots had occurred three times that year. 

But the oncologist just scoffed. Rather than investigating the cause, the oncologist stared at Kiki and asked, “What exactly are you doing that keeps causing blood clots in your arm?” 

The implication – that Kiki was an IV drug user – took Kiki’s breath away at first, and then the anger set in.

“If I was not a person of color, would she have asked me that question?” Kiki asks, still astounded. “It’s already hard to deal with cancer and the healing process, but how are you supposed to heal when you’re being slapped in the face every step of the way?” 

Moving Forward with Might

Kiki remains on her healing journey but has made significant strides since she began. Ever since meeting with her new neurologist a year ago, she has only had one – maybe two – PNES episodes. 

“Many doctors don’t believe this is a real thing, which is why so many people haven’t heard of it,” she says. “But having someone believe me was huge. Your body is so powerful and can manifest so many things that we can’t even believe. It takes asking those questions about trauma rather than making assumptions, and I hope my story can encourage some doctors to take that step.”

She also wants her story with breast cancer to inspire others. Two years ago, she had never met anybody else who was flat — but now she knows that an entire community exists. If she can help them on their journey, in any way, she wants to: “After all, we’re here to help each other.” 

To those with PNES, breast cancer, or any other conditions, Kiki wants you to know that you’re not alone. To be diligent, do your homework, and always be your own advocate “because nobody can speak for you better than you. You know what you’re feeling. Don’t let people persuade you to do things if you don’t want to do them. You have to live with those decisions, and you’re the only one who has to deal with the physical elements.” 

No matter what comes next, Kiki knows that she has support behind her: from her family, daughters, and husband, who she calls her biggest cheerleader.

And she wants to pay that support forward: “When I see people who are losing their lives to breast cancer or other diseases, I think: ‘I’m going through a lot, but I’m still here. And I can make a difference.’”