Chapter Six: In Due Time
It is well-established that women tend to experience unfair or disrespectful treatment in medical settings at a higher rate than men. A 2024 KFF survey on women’s health found that over one in three women reported having at least one of several negative health care experiences, including being ignored, dismissed, or personally blamed for a health issue by their provider.
This has been a common thread among the women I spoke to for this project, but it was perhaps no more pronounced than in the case of Brooke.
She reached out to me through the Michigan Medicine Health Equity Core and currently works to serve a government-funded grant program at a college in southeast Michigan.
Brooke started experiencing her first symptoms during high school; 15 years later, she is still looking for concrete answers about the root cause of her illnesses. One thing has remained consistent over the years, though: the medical providers who are supposed to help her find treatment are, more often than not, extremely dismissive.
“Around high school, I noticed I was always kind of fatigued, I had really bad facial flushing, and I would get lightheaded,” she said. “Every time I would talk to a medical professional, it was the usual, ‘Well, you have anxiety, you have depression, you need to eat less, lose more weight,’ and everything in-between that women often get stamped with.”
Brooke also suffers from back and spinal pain, and, like me, has had many an imaging screen come up empty. “They've done x-rays after x-rays. And because those look normal, I've been told ‘it's really just in your head.’”
“It was hard. It was very hard. I just started to doubt myself. I started to tell myself, ‘well, you do have anxiety, you do have this, you do have that.’ And I just kind of forced myself to live in pain.”
Constantly being dismissed and brushed off did nothing to help treat Brooke’s issues; it just spawned new ones in its wake.
“It did cause me to develop an eating disorder because doctors kept telling me I was overweight. It did cause me to get diagnosed with borderline personality disorder. It wasn't just anxiety,” said Brooke. “All of these things, the years you spend getting doubted, it really takes a toll, mentally and physically.”
Over the past couple of years, Brooke has made a dedicated effort to get definitive answers about her illnesses. “I think my body has hit a breaking point where it says, ‘We can't do this anymore. We need answers.’”
Marrying her husband was a major turning point, she said. After they moved in together, he started to point out that something was seriously wrong.
“Getting married and having the independence, not living at home under mom or dad or whoever in someone's life that is putting up that wall and is telling them, ‘you’re fine,’ you have the freedom to think and realize, ‘No, I'm not fine. I have trouble functioning.’ I should be able to bring the laundry basket just down the hall, not even downstairs, without passing out.”
Brooke’s efforts have led her to a supportive online community and landed with a primary care provider who has been helpful in getting her the referrals she needs.
Still, she has yet to find a root cause. And she has continued to face more than her fair share of barriers to diagnosis and treatment. “Every time I've had a referral written for the past five years, I've been denied from the University of Michigan Hospital.”
“Before this, I was very pro-medical system. I think we're a country that's very blessed to have the medical system we do. But I do think if you are a female and you are under a certain age bracket, you're screwed,” she said.
“It's not like cancer, right? You don't see the outward symptoms. You don't see someone losing their hair. You don't see the chemo. You don't see burns on their skin like a burn victim. It's all internal. And how do you explain that to someone? You can't.”
Over the years, Brooke’s symptom management techniques have included mobility aids, physical therapy, massage methods, dialectical behavioral therapy, and an exorbitant number of medications.
“I'm just on a lot of medication, and I don't like that. I don't want to be on that many. I think I have 13, and at one point I was on 20,” she said.
To that point, Brooke was diagnosed with fibromyalgia a few years after the first onset of her symptoms.
“They diagnosed me with fibromyalgia when I was about 18, but that was just kind of a blanket [diagnosis]. And so for about five years, we just upped, and upped, and upped medication,” she said. “Fibromyalgia was the band-aid that covered all those years of pain, because once doctors saw it in my chart, everything I had, every symptom was fibromyalgia.”
“I almost wish I had never had that word slapped on my medical chart.”
But medication is often not an end-all-be-all solution for people who suffer from the same pain or illness for years. It fails to address the root cause of any issue, and taking any medication will come with risks and potential side effects.
The two of us talked at length about not wanting to be on heavy medication. Her case is a lot more severe than mine — I don’t take anything other than over-the-counter painkillers for my back pain — but we both felt there had to be something more that can be done.
“That's what doctors are there to do, really. They're there to medicate you. That's what they've been taught, is to solve a problem,” Brooke said. “Medication, that doesn't work for people like you and me, who are like, ‘but I don't want medication. That's not what I want. I want an answer so I can do research, or you can help me research how to fix it without being on heavy medication.’”
Despite all the obstacles she has faced, Brooke is as determined as ever to unravel the cause of her illnesses.
“It really impacted who I became,” Brooke said of her chronic illnesses. “It isn't until, within the last two years, with extensive, extensive therapy, that I've started to have this journey where I'm like, ‘No, I want answers. This has gone on too long, and I deserve answers.’”