Autoimmune Diseases: Why Millions Go Undiagnosed​ & What to Do about It

autoimmune diseases

Autoimmune diseases are more common than you think, but they’re misunderstood in the medical community.

In early 2013 I became chronically exhausted for no apparent reason. I began going to bed right after work and sleeping through the weekends, but my fatigue only worsened. Next came the unexplained fevers and rashes, the extreme dizziness when I was exposed to sunlight, and the joint and muscle pain that was so severe it sometimes left me in tears. I explained my symptoms to my primary care doctor and told her about the lengthy history of autoimmune disease in my family. After running the most basic blood work possible, she told me I was physically fine, my symptoms were likely due to “stress and anxiety,” and sent me on my way.

I spent the next four years going through the exact same process with four different doctors in New York and Seattle. By the end of 2017 I was at my wits’ end. Then at long last I found a doctor who took my symptoms seriously and ran the correct tests. I was diagnosed with two autoimmune diseases and referred to a specialist who put me on the appropriate medications and wrote insurance referrals so I could receive acupuncture, medical massages and other procedures to alleviate my symptoms.

At first I thought I’d just been exceptionally unlucky. But it didn’t take long for me to learn that my case isn’t an anomaly — it’s the norm. Out of the millions of people suffering from autoimmune diseases, I’m a member of the majority who’ve been brushed off and invalidated by doctors who repeatedly tell patients to stop acting “hysterical.” I was shocked to learn that, despite the fact that an estimated 50 million Americans have an autoimmune disease, it takes an average of 4.6 years and five doctors to receive an accurate diagnosis and move forward with an effective treatment plan. As a result, millions of patients spend years enduring an unnecessary level of physical pain and suffering.

According to a list compiled by the American Autoimmune Related Diseases Association, there are over 80 autoimmune diseases. Examples include lupus, celiac disease, rheumatoid arthritis, Hashimoto’s thyroiditis, multiple sclerosis, and chronic Lyme disease. Although fibromyalgia and chronic fatigue syndrome are not currently classified as autoimmune illnesses, many doctors believe they will fall into this category once further research is conducted.

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Furthermore, studies have found that approximately 25% of people with one autoimmune disease will develop a second or even a third autoimmune condition. This statistic makes it even more distressing that patients have to jump through so many hoops in order to receive just one correct diagnosis.

I spoke with two doctors who specialize in autoimmune and chronic pain diseases about why this aspect of our medical system is so broken.

Dr. Stephen Wander, owner and treatment director of The Integrated Health Center of Maryland, solely treats patients with autoimmune diseases and type 2 diabetes. “It’s very easy to test for lupus, rheumatoid arthritis and Hashimoto’s,” Wander told me. Yet primary care doctors remain reluctant to run these basic tests.

“I think the reason for this is that they’re not properly trained to handle autoimmune diseases. They can run a test that comes back positive or negative, but what they’re going to do isn’t going to change, so they don’t want to run the test. Unfortunately, the way traditional medicine works, they don’t have time to deal with you,” he explained. “What’s even crazier is that I’ve had patients go back to their doctors with objective data written in black-and-white, and yet the patient will get a prescription for an issue that they don’t even have.”

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Because treatment paths for these illnesses are complex, Wander explained that doctors tend to prescribe people medications that have nothing to do with the cause of their illness.

“For example, with rheumatoid arthritis patients, they’ll prescribe an anti-inflammatory or muscle relaxer, or some type of immune depressant, which is pretty much just going to make the patient sicker,” he said.

It’s also common for doctors to chalk up patients’ symptoms to anxiety, depression or other mental health issues rather than acknowledge that something is physically wrong. “A lot of autoimmune patients are so frustrated and so sick that when they start talking about their issues, they sound a little more demonstrative and outwardly loud or emotional compared to a ‘normal’ patient,” Wander said. “And then the doctor decides the patient is just anxious and needs antidepressants.”

Dr. Bruce S. Gillis, who specializes in treating fibromyalgia, told me his patients have been told their symptoms are the result of problems in their love lives. “There have been so many times when I’m speaking to people, particularly women, who say they went to the doctor and he put his arm around them and said, ‘The trouble here is that your husband doesn’t love you enough,’ or ‘You’ve gotta go home and have some good sex because that will cure you.’ And it’s stunning that a professional would say those kinds of things.”

Patients with autoimmune diseases such as lupus and rheumatoid arthritis can receive a definitive diagnosis when they’re finally given the proper testing. But because fibromyalgia and chronic fatigue syndrome can’t be diagnosed through a blood test, the process takes even longer. Furthermore, these patients are forced to deal with an additional stigma: the belief that their illnesses aren’t real and they’re simply making it all up.

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Because these conditions are so prevalent, I asked Wander why primary care doctors don’t receive more training about autoimmune diseases so they know when to refer patients to a specialist.

“It’s common sense for you to say that, but that’s not how the system works. Their training at medical school is sponsored by pharmaceutical companies,” he explained. “It’s not in the pharmaceutical companies’ interest to sponsor that type of training, so change isn’t going to happen.”

It doesn’t appear that common sense will prevail anytime soon, so it’s crucial that patients advocate for themselves when doctors dismiss their symptoms. “Something that I learned a long time ago is the only way you get maximum benefit when you see any specialist, whether it’s a physician or an accountant or an attorney, is for you to learn practical information so you can ask the right questions,” Gillis said. “Google your symptoms and learn as much as possible so you can at least ask some questions. And if the physician says they don’t believe you, then tell them to explain exactly why not. Don’t accept a blanket answer of ‘I don’t believe you’ or ‘I disagree.’”

Wander had similar advice. “If a doctor tells you something that doesn’t make sense, then you need to tell them to make it make sense to you,” he said. “If they can’t do that, go to a different doctor. They don’t have to live with their decision. The only one that has to live with this is the patient. So if the treatment that you’re getting is either not working or doesn’t make sense to you, find a doctor whose treatment plan makes sense.”

“If a doctor tells you something that doesn’t make sense, then you need to tell them to make it make sense to you. If they can’t do that, go to a different doctor.”

—Dr. Stephen Wander

Of course, when people are suffering from an untreated autoimmune disease, it often requires a herculean effort to simply get through the day. That’s why it’s critical to have a support system of people who can help you find the appropriate care. “One way family and friends can help is by doing research for you,” Wander said. “They can find the type of practitioners that deal with these diseases.”

Depending on the severity of a patient’s case, the social and professional effects can be devastating. “I’ve seen fibromyalgia patients who once made six-figure incomes no longer be able to work,” Gillis said, adding that many feel like social pariahs because the illness leaves them in too much pain to attend social gatherings.

“I’ve had people who’ve had to retire or quit their jobs or not get jobs at all because of [autoimmune diseases],” Wander said. “If you have ongoing symptoms and they’re not being addressed properly, then they’re just going to get worse. When you don’t have the energy to do anything and you’re experiencing memory loss and brain fog, that’s not a good combination for a marriage and it creates marital strife. I see it all the time.”

Although autoimmune illnesses aren’t curable, they are treatable — and that’s why it’s worth it to persevere, advocate for yourself and find a specialist who will work with you to find the most effective treatment plan. It’s entirely possible for autoimmune patients to live fulfilling lives, but they can’t do so if they don’t receive the appropriate medical care. As celebrities like Selena Gomez and Lady Gaga use their platforms to bring attention to these conditions, the public has become more aware of what it’s like to live with an illness like lupus or fibromyalgia. And as the public becomes more aware and educated, primary care doctors will no longer be able to hide behind the claim that “it’s all in your head.” end

 

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