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The postpartum period brings a rollercoaster of emotions with it: Joy, stress, exhaustion, anxiety, irritability, and sadness. But what happens when you’re dealing with all of these new feelings, a new baby – and a mysterious illness?
Emily Cresswell is the director of Brand and Product at FoXX Health, a women’s health self-advocacy app. About one year after giving birth, she started experiencing a host of awful symptoms 24/7, only to be met with dismissal by her healthcare provider. Cresswell endured months of being told she was probably still processing her birth trauma, and that her emotional and hormonal upheavals were the likely culprits behind her intolerable symptoms.
Six months after getting nowhere close to a diagnosis, Cresswell sought help from a naturopath, who diagnosed her with Mast Cell Activation Syndrome (MCAS). In this rare condition, mast cells (blood cells that are part of your immune system) mistakenly act when they shouldn’t, causing severe symptoms like anaphylaxis.
Cresswell’s story highlights the continuing problem in our healthcare system where women still feel ignored and gaslit into thinking their medical issues are all in their heads. In reality, we’re battling very real conditions — like MCAS — that must be acknowledged.
Read on for Cresswell’s story and additional information about MCAS.
MCAS: It’s not hormonal, and it’s not depression, either
“Twelve months postpartum, my life became an unending series of alarming symptoms,” Cresswell tells Rescripted. “Nightly, I’d wake drenched in sweat, heart racing, and covered in a red-hot rash of hives. Each morning brought a haze of muscle stiffness, excruciating joint pain, and overwhelming brain fog. It felt like my body was falling apart, with the night and day presenting two completely different physical responses.”
One morning, Cresswell experienced “what felt like electric shocks in my heart. Two sharp, agonizing pangs followed by nausea and intense sweating.” Fearing she could be following in the footsteps of her “healthy and active” 76-year-old mother, who had a heart attack just one year earlier due to stress as opposed to “classic coronary issues,” Cresswell headed off to the emergency room. Once at the hospital, “the flurry of activity and immediate attention led to... nothing. Every test showed no physical cause for the pain.”
Cresswell didn’t get any answers during her follow-up with her general practitioner, either. “The follow-up was frustratingly fruitless,” she says. “Standard tests ensued. Thyroid, blood count, everything expected, and all returned normal.” What also didn’t help was how her doctor's words “echoed a familiar, dismissive refrain: ‘You’ve recently had a baby; your body and hormones undergo significant changes, and the birth was particularly traumatic. It sounds like you’re still processing that trauma emotionally. Maybe you just need to take it easy.’"
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Cresswell continues: “These words, meant to reassure, only amplified my doubts about my sanity. And so a mental game with myself began: gaslighting, questioning reality. But each day and night, the symptoms went on, and the logical side of my brain knew it had nothing to do with my emotions, my son's birth, or my postpartum hormones.”
Over the next six months, Cresswell saw her “increasingly skeptical GP” at least a dozen more times, “my credibility awkwardly dwindling with every visit,” she says. “I started each appointment with an apology for taking up her time.”
No closer to a diagnosis, Cresswell’s doctor floated the idea of antidepressants, arguing that Cresswell wasn’t “mentally doing well.” As she began postpartum depression evaluations, Cresswell still “felt we were barking up a completely pointless tree, but I complied, to not appear ungrateful for any medical attention that may ultimately lead to a diagnosis.”
It wasn’t until a friend, who advocates for a holistic approach to health, suggested Cresswell might be experiencing MCAS. “On her advice, I consulted a naturopath who specialized in MCAS,” says Cresswell. “They suggested specific tests during one of my middle-of-the-night flare-ups.”
The test results were conclusive: Cresswell had MCAS.
What is MCAS – and is there a pregnancy correlation?
Mast cell activation syndrome occurs when your mast cells — allergy cells responsible for immediate allergic reactions — incorrectly alert your immune system that there’s something harmful in your body.
When this happens, it can result in severe symptoms like swelling, shortness of breath, hives, diarrhea, joint pain, and vomiting. While MCAS can be treated and managed with medication, there is no cure.
Frustratingly, there is no established explanation for how or why MCAS occurs, and more research is needed to determine specific causes. In addition, there’s not enough evidence to suggest a connection between Cresswell’s MCAS and her pregnancy and/or her postpartum hormones. The good news is, this 2020 article from the Journal of Obstetrics and Gynaecology does push for increased research among pregnant or postpartum MCAS patients – as none had been performed at the time of the article’s publication.
From aggravation to advocacy
Once she had her MCAS diagnosis in hand, Cresswell gained a new lease on life: “With the right care and medication, shockingly, I was almost completely back to normal within weeks,” she tells Rescripted.
But Cresswell’s story doesn’t end there. Just because she received her diagnosis doesn’t mean there aren’t countless women still waiting for their own light at the end of the tunnel. “The road [to diagnosis] was lined with dismissal,” reflects Cresswell. “Birth trauma, postpartum hormones. These became convenient, albeit incorrect, diagnoses that clouded the true nature of my illness.”
Cresswell is well aware that her “experience isn’t unique but part of a larger, distressing pattern.” She’s recounting her experiences here because she knows that “women frequently face medical gaslighting, their symptoms attributed to hormones or emotions, leading to misdiagnosis or complete dismissal.“This must change,” she tells Rescripted. “It’s time for the medical community to listen more closely, to dig deeper than the most convenient explanation. Women’s health deserves diligence, not dismissal. We are not just our hormones or our emotional responses. We are individuals with complex, valid medical needs that demand attention and respect.”
Sarene Leeds holds an M.S. in Professional Writing from NYU, and is a seasoned journalist, having written and reported on subjects ranging from TV and pop culture to health, wellness, and parenting over the course of her career. Her work has appeared in Rolling Stone, The Wall Street Journal, Vulture, SheKnows, and numerous other outlets. A staunch mental health advocate, Sarene also hosts the podcast “Emotional Abuse Is Real.” Subscribe to her Substack, the Critical Communicator, and follow her on Instagram, BlueSky, or Threads.