Stephanie Hallett
April 25, 2019 8:14 am
Anna Buckley, HelloGiggles

Samantha Chavarria started to notice symptoms of fibromyalgia after giving birth to her third child. “I noticed pain and sensitivity in my arms first,” she told HelloGiggles. “I had a very physical job working as a bakery manager. I would come home from 8 to 10 hours in the bakery and would literally stay in a chair without moving until the evening.”

She initially thought the chronic pain and tenderness were related to her job in the bakery, but they were actually symptoms of an underlying illness. When she sought help from her regular doctor, though, she was simply told to lose weight. “Fibro cannot be determined by blood work or tests. Instead, it is determined by eliminating all other rheumatic issues,” Chavarria said. “This doctor ran some tests, which all came back negative, and she concluded that I was fine.”

It took Chavarria, who is a freelance writer and regular contributor to HG, over a year after that experience to finally get a fibromyalgia diagnosis; she said she was “too afraid of not being believed” to share her pain with another doctor. “It was better to struggle with my pain privately rather than open myself up to scrutiny again,” she said.

Chavarria’s experience is not uncommon. According to the International Association for the Study of Pain, chronic pain conditions, such as fibromyalgia, irritable bowel syndrome, rheumatoid arthritis, and migraines, affect more women than men globally, but women are less likely to receive treatment. According to Dr. Jennifer Wider, a women’s health expert, sexism plays a role in that gap.

Ali Haggett, a former medical historian, told HG that historical gender biases may play a role in women’s inability to get a correct diagnosis. “There is a longstanding cultural association between women and ‘weakness’ and irrationality, borne from ancient understandings that they were dominated by their reproductive organs (‘hysteria’ meant wandering womb—it was thought to rise up through the body cavity causing a host of unexplainable symptoms). Over time, this has led to the potential for the medical profession to consider that female expression is likely to be neurotic or irrational in some way,” she said.

Too often, women who report chronic pain to their doctors are told there’s nothing wrong with them, or that they need to make a lifestyle change—like losing weight—to deal with their pain. For women with fibromyalgia, for example, it takes an average of five years to receive a correct diagnosis, according to the American Chronic Pain Association. For Black women, the situation is even worse; not only do African American women face a higher risk of developing a chronic illness, but racial discrimination and bias in medicine mean they’re less likely to be believed and to get the treatment they need.

Sexism and racism in medicine are big issues that aren’t going away any time soon. But in the meantime, it’s important for women with chronic pain to feel empowered to stand up for themselves in the doctor’s office. It’s hard, of course, to stay strong in the face of rejection, especially by someone who’s supposed to care about your well-being and be an expert. But if you’re looking for some advice about how to speak up for yourself, keep reading.

Keep a symptom journal

Your doctor is seeing you in a particular moment and assessing your pain based on your description that day. But they may not get a full picture of all you’ve been dealing with unless you have a timeline showing consistent symptoms over time, so start keeping a pain journal documenting your symptoms.

“Pain is very subjective,” said Dr. Wider. “Describing your symptoms clearly will help: how it feels, the location, how severe, how often it occurs, and how long it’s gone on for.” She recommended writing down anything that makes your pain worse, such as the time of day, after you eat, etc.

Patrice N. Douglas, a licensed marriage and family therapist who often works with women of color patients who say that doctors are ignoring their pain, also recommends writing down your symptoms.

“Start keeping a journal of your symptoms day by day so that when you go into the doctor and they’re like, ‘Okay, it sounds like it may be a mild flu.’ You can say, ‘Doctor, [I had] a fever from Monday to Tuesday last week; I was throwing up.’ Have a timeline of  things that are going on so that when you go to the doctor, you can have evidence that this isn’t just something that occurred over night.”

Go to the doctor before things get really bad

Often, we wait until things get really bad before we visit the doctor. But at that point, your doctor may just try to treat your pain symptoms instead of treating the underlying cause of the pain.

“If you’re not feeling well, go when you’re not feeling your best, not when on a scale of 1 to 10 it’s at a 20,” said Douglas. “Women will wait until their limbs are falling off to get help.”

This is especially true for some Black women, Douglas said, who may feel they have to be strong all the time. She acknowledged that the Black community has a dark history with the medical profession, so there’s a dynamic of mistrust there. But she added that trusting doctors is an important step to getting necessary care.

“We have to start speaking up when we’re not feeling well—right away,” Douglas, herself a Black woman, told HG. “If you know you’re hurting, this is the time to start making the phone call to the doctor, this is the time to start documenting. Not, ‘Oh, it’s not that bad, I can do it. I’ve got too many things going on in life that I can’t take a moment to check on my health.’ You’d rather put everything else [first] because you want to be this strong, Black woman, but in reality, your body is shutting down on you while you’re trying to be strong. You can’t be strong 24/7.”

Take notes in the doctor’s office

If you sense that your doctor isn’t taking your pain seriously, or that they’re speaking too quickly and you can’t keep up, Douglas suggested writing down what the doctor is saying and reading it back to them.

“If your doctor’s not making eye contact or they’re talking too fast, have them write down what they’re talking about, or take notes. And while you’re taking those notes, repeat back what they just said…so that the doctor’s aware that you’re paying attention,” Douglas said. “A lot of times, they think you just want prescription drugs, that you’re not here to really figure out what’s going on, that you just want to relieve the pain, so they’re rushing the process.”

Use “I” statements

If you decide you want to confront your doctor about how they’ve been treating you, Douglas said it’s important to know what is bothering you first. Are you not getting enough eye contact? Are you being rushed out of the office? Is your doctor giving only painkillers and ignoring a possible chronic illness? Do you have an idea of what might be wrong but your doctor is brushing you off? Figure out what the problem is, then use “I” statements to express it to your doctor.

Douglas suggests saying things like, “I feel like I’m not being heard because when I talk to you, I don’t get any eye contact. I don’t get any feedback about what I just said. I feel like I’m just rushed out the door.” These types of “I” statements should help your doctor realize they’re affecting you emotionally, and hopefully they won’t become defensive.

Get a second opinion

If your doctor recommends a treatment that seems off to you, or gives you a diagnosis that doesn’t feel quite right, you should feel free to seek another opinion.

“A second opinion never hurts,” said Dr. Wider. “If a procedure, surgery, or medication is recommended, getting a second opinion can only help. Sometimes options may be limited, so if you can’t get a second opinion, make sure all of your questions are answered thoroughly and explained so you have a comfort level with the recommendation.”

When all else fails, ditch your doctor

At some point, you may decide you’ve had enough and your doctor just isn’t taking your concerns seriously. At that point, it might be time to ditch your provider and seek help elsewhere.

“Any health care provider who is dismissive, doesn’t answer questions, seems annoyed, [or] spends very little time with you may be cause for concern,” said Dr. Wider. “Time to switch!”

Added Douglas, “You’re never stuck with any medical professional, whether it’s a therapist or a doctor. If you’re not happy, or you don’t have good communication with your doctor, then it’s always okay to go find another doctor. There’s always going to be another doctor.”

Chavarria told HG that if she could go back in time, she would have tried to seek treatment from another provider soon after her first doctor’s incorrect diagnosis. She said she lived in pain for too long, and hopes other women get diagnosed much more quickly.

“To any woman experiencing rejection from the medical community, I would tell her that her pain is valid. It can take a long time to get a diagnosis, but that doesn’t mean that your experience isn’t real. Your pain matters,” she said. “Don’t underestimate the power that chronically ill women possess.”

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