{"id":18108,"date":"2019-03-11T14:09:03","date_gmt":"2019-03-11T19:09:03","guid":{"rendered":"http:\/\/thepapergown.zocdoc.com\/?p=18108"},"modified":"2023-03-03T15:45:41","modified_gmt":"2023-03-03T20:45:41","slug":"the-difficulty-of-getting-diagnosed-and-treated-for-more-than-one-chronic-illness","status":"publish","type":"post","link":"https:\/\/www.zocdoc.com\/blog\/patient-stories\/the-difficulty-of-getting-diagnosed-and-treated-for-more-than-one-chronic-illness\/","title":{"rendered":"Fighting to Be Heard When You Have a Chronic Illness"},"content":{"rendered":"

After you\u2019re 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\u2019t fall asleep or can\u2019t get out of bed; if your heart or your mind is racing \u2014 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\u2019re 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. <\/span><\/p>\n

I was diagnosed with <\/span>relapsing remitting multiple sclerosis<\/span><\/a> in 2013. I also have anxiety. That means, at times, I\u2019m staring down dueling conditions and a mess of overlapping symptoms, wondering what I can do \u2014 which pill I can take or workout class I can sweat through \u2014 to make myself feel better. Sometimes, all I can hope to do is resolve one <\/span>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.\u00a0<\/span><\/p>\n

Living with two conditions is exhausting and confusing, but it could be worse. At least I know that I\u2019m fighting two health battles. What’s more, I have the tools to fight both of them.\u00a0<\/span>For many disabled and chronically ill people \u2014 especially chronically ill women \u2014 it’s\u00a0<\/span>unduly difficult to get adequate treatment for more than one condition.<\/p>\n

Lisa is a 49-year-old woman with fibromyalgia. Until recently, she was unaware that she\u2019d also been having silent heart attacks, and that both conditions were responsible for the symptoms she\u2019d 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\u2019d 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\u2019d just have to get used to. <\/span><\/p>\n

Four years later, Lisa was admitted to hospital with a chest infection. <\/span>A pulmonologist,\u00a0unnerved 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.<\/span><\/p>\n

Lisa\u2019s story highlights the impact of gender bias on patient care. A 2016 study by the\u00a0<\/span>Brain Tumor Charity<\/span><\/a>\u00a0involving 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<\/span>\u00a0in\u00a01990, one study<\/a> found that\u00a0women presenting with chronic pain conditions were more likely than men to be misdiagnosed with a mental illness and prescribed psychotropic drugs.<\/span><\/p>\n

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<\/span>\u00a02018 study published in\u00a0PNAS<\/a><\/em>,<\/em> 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.<\/p>\n

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\u00a0The Independent<\/i><\/a> points out, gender disparity sometimes occurs because some \u201cdoctors wrongly perceive women are being more irrational and emotional than men.\u201d<\/p>\n

Barriers to proper diagnosis and treatment only increase when new symptoms are viewed alongside a pre-existing condition.\u00a0<\/span>Physicians and patients are going to have to find a way forward. <\/span><\/p>\n

\u201cChronic disease and long-term illnesses, such as diabetes, asthma, heart disease, hypertension and cancer, now affect half of all adults in the Western world,\u201d said Nicholas Rumble, CEO of <\/span>Curiazon<\/span><\/a>, 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 \u201cthe fourth biggest killer globally.\u201d 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.<\/span><\/p>\n

But as anyone living with a disability or long-term condition knows, it\u2019s 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 <\/span>Joe Ciavarro Jr.<\/span><\/a> says that establishing a relationship with your provider is crucial, particularly if you suffer from multiple conditions. He would know, <\/span>as someone living with multiple chronic conditions himself. <\/span>\u201c<\/span>The hardest part is trying to get your provider to understand the complex history of what you have been through,\u201d he told me. \u201cWhen I have an appointment coming up, I spend some time writing down questions and concerns I have to make sure they are addressed.\u201d Noting dates and times of distressing or strange symptoms helps to build a record, which is more difficult to dismiss.<\/span><\/p>\n

Everyone\u2019s \u201cnormal\u201d is different. It\u2019s 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\u2019s a medical professional, a caretaker or just someone in your corner, should \u201cbe 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,\u201d Ciavarro said.<\/span><\/p>\n

There will always be room for error. That\u2019s 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\u2019t easy, but if you feel you\u2019ve become synonymous with your first chronic illness diagnosis, it\u2019s essential.<\/span><\/p>\n

\n

Ready to book a doctor’s appointment? Visit Zocdoc.<\/span><\/a><\/span><\/h1>\n","protected":false},"excerpt":{"rendered":"

For people diagnosed with a chronic condition, additional health issues too often remain poorly managed or ignored altogether. <\/p>\n","protected":false},"author":16,"featured_media":18117,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[231],"tags":[12,17,134,43],"class_list":["post-18108","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-stories","tag-anxiety","tag-chronic-illness","tag-gender","tag-multiple-sclerosis","reviewer-dr-nassim-assefi","specialist_by_city-find-primary-care-physicians-near-you"],"yoast_head":"\nFighting to Be Heard When You Have a Chronic Illness - Patient Stories<\/title>\n<meta name=\"description\" content=\"For people diagnosed with a chronic condition, additional health issues too often remain poorly managed or ignored altogether.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.zocdoc.com\/blog\/patient-stories\/the-difficulty-of-getting-diagnosed-and-treated-for-more-than-one-chronic-illness\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Fighting to Be Heard When You Have a Chronic Illness - 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