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Fighting to Be Heard When You Have a Chronic Illness

After you’re diagnosed with a degenerative chronic condition, your condition might monopolize the conversation every time you see a doctor. If you feel nauseated or nervous or itchy; if you can’t fall asleep or can’t get out of bed; if your heart or your mind is racing — every health concern you voice might be chalked up to your condition. If you suspect that something else is causing your new symptoms, you might be ignored or told you’re wrong. It might take months or years for a medical professional to take your concerns seriously and acknowledge that, as you suspected, you do have more than one condition. Even with your hard-won second diagnosis, it might still be a constant struggle to get the care you need for both conditions.

I was diagnosed with relapsing remitting multiple sclerosis in 2013. I also have anxiety. That means, at times, I’m staring down dueling conditions and a mess of overlapping symptoms, wondering what I can do — which pill I can take or workout class I can sweat through — to make myself feel better. Sometimes, all I can hope to do is resolve one issue without aggravating another. In hindsight, I realize that some of my initial MS symptoms were written off as other, lesser ailments, such as when nerve disturbances and numbness in my arm were misdiagnosed as a repetitive strain injury. And prior to my MS diagnosis, my mounting anxiety was routinely downplayed as routine stress. 

Living with two conditions is exhausting and confusing, but it could be worse. At least I know that I’m fighting two health battles. What’s more, I have the tools to fight both of them. For many disabled and chronically ill people — especially chronically ill women — it’s unduly difficult to get adequate treatment for more than one condition.

Lisa is a 49-year-old woman with fibromyalgia. Until recently, she was unaware that she’d also been having silent heart attacks, and that both conditions were responsible for the symptoms she’d been experiencing. Lisa would describe to her doctor a severe pain that started in her chest and radiated up her neck and through her jaw on one side. The doctor would say it was her fibromyalgia. She’d explain how drastic the pain had been, to the point where she thought she might be dying. The doctor would tell Lisa again that the pain was not only nothing to worry about, but a symptom she’d just have to get used to.

Four years later, Lisa was admitted to hospital with a chest infection. A pulmonologist, unnerved by the pain and symptoms Lisa described, finally ordered some tests. The results suggested that Lisa might have been suffering silent heart attacks for years.

Lisa’s story highlights the impact of gender bias on patient care. A 2016 study by the Brain Tumor Charity involving 927 brain cancer patients found that most men were diagnosed the first or second time they saw a doctor, whereas it typically took women five or more visits before their symptoms were taken seriously. Back in 1990, one study found that women presenting with chronic pain conditions were more likely than men to be misdiagnosed with a mental illness and prescribed psychotropic drugs.

Gender-based treatment disparities appear to be pronounced for certain health issues, such as heart disease. One 2000 study found that women were seven times more likely than men to be misdiagnosed and discharged mid-heart attack. In more recent years, there have been increased efforts to raise public awareness about the differences in heart attack symptoms for men and women. But bias persists. A 2018 study published in PNAS, which analyzed almost 582,000 heart attack cases over a period of 19 years, found that women were around three times as likely to survive when treated by a female doctor as opposed to a man.

Why do men and women have such different experiences wearing the paper gown? There are probably a few reasons. For starters, medicine has been molded on men’s physiology, not women’s, for decades, if not centuries. As a result, when an illness manifests differently in women, their symptoms may be dismissed as unrelated. There are experts working to revise this male model of disease, but it will take time. Also, as The Independent points out, gender disparity sometimes occurs because some “doctors wrongly perceive women are being more irrational and emotional than men.”

Barriers to proper diagnosis and treatment only increase when new symptoms are viewed alongside a pre-existing condition. Physicians and patients are going to have to find a way forward.

“Chronic disease and long-term illnesses, such as diabetes, asthma, heart disease, hypertension and cancer, now affect half of all adults in the Western world,” said Nicholas Rumble, CEO of Curiazon, a tech developer that leans into drug adherence as a possible avenue for change. According to Rumble, more than half of the people suffering from long-term or chronic illness fail to take their medication as prescribed, which makes drug non-adherence “the fourth biggest killer globally.” If patients are able to adhere to their treatments, he theorizes, there is less room for ambiguity when it comes to diagnosing extra, unexpected and potentially fatal diseases.

But as anyone living with a disability or long-term condition knows, it’s often difficult or impossible to speak up for yourself when experiencing life-changing, painful or cognitive-impairing symptoms. That said, there are tools at our disposal. Physician assistant Joe Ciavarro Jr. says that establishing a relationship with your provider is crucial, particularly if you suffer from multiple conditions. He would know, as someone living with multiple chronic conditions himself. The hardest part is trying to get your provider to understand the complex history of what you have been through,” he told me. “When I have an appointment coming up, I spend some time writing down questions and concerns I have to make sure they are addressed.” Noting dates and times of distressing or strange symptoms helps to build a record, which is more difficult to dismiss.

Everyone’s “normal” is different. It’s always a learning curve to find out what symptoms are expected from a chronic illness, what might be unrelated and what your normal baseline experience is. Anyone on your team, whether it’s a medical professional, a caretaker or just someone in your corner, should “be vigilant in understanding that when a patient with a chronic condition presents with new or changed signs and symptoms, a full and unbiased investigation is warranted,” Ciavarro said.

There will always be room for error. That’s why all patients, and women in particular, need to make their healthcare a priority, or find an advocate who can do so on their behalf. Fighting to be heard isn’t easy, but if you feel you’ve become synonymous with your first chronic illness diagnosis, it’s essential.

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The Paper Gown, powered by Zocdoc, covers health and healthcare with a focus on patient experiences — inside and outside the exam room, before check-ups and after surgery, across all states of health. We strive to tell stories that help patients feel informed, empowered and understood. Learn more.