17 Women With Chronic Illnesses Share How They Finally Got Diagnosed
Getting a chronic illness diagnosed is an uphill battle for anyone. But women with chronic illnesses in particular face doctors who take their pain less seriously, stereotypes that they're "hysterical," and illnesses that are under-researched and poorly understood. In order to get a diagnosis, women often have to visit multiple practitioners and do lots of detective work on their own.
Women disproportionately suffer from chronic health issues due to a number of societal inequalities, Maya Dusenbery, author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, tells Bustle. "The main reason that women tend to be sicker than men is that medicine hasn't appreciated that there are often important sex/gender differences in health and disease and hasn't taken women's illness as seriously as men's," she says. This lack of attention to women's health issues means that women often have to be their own advocates.
Here are some stories from women with chronic illnesses about their searches for a diagnosis. Even in a world where women are set back in so many ways, healthcare being one of the most egregious, these anecdotes paint a hopeful picture of women persevering and taking matters into their own hands in order to care for their health. Perhaps they'll provide you with hope or even some clues if you're struggling to get to the bottom of your own illness.
1. Laura, 36, Endometriosis
"After going to five doctors and being told it was all in my head (or I was looking for drugs — which I was because the pain was so bad), my mother bullied her way into getting me a recommendation for a pelvic pain clinic. (Thanks, Mom!) Diagnosis, laparoscopy, and IUD came shortly after. I remember sobbing with relief because someone finally believed me — and now that my issues had a name, we could start fixing them."
2. Isabella, 20, Postural Orthostatic Tachycardia Syndrome (POTS)
"I was dismissed as anxious for months when I was experiencing exhaustion and shortness of breath when standing. I did my own research and figured out I had Postural Orthostatic Tachycardia Syndrome. I asked the nurse at my GP to take my heart rate lying down and standing up. She laughed at me but stopped when my heart rate shot up 48 bpm. A tilt table test was ordered, and then I was officially diagnosed with POTS."
3. Danielle, 40, Fibromyalgia
"I spent years going to the doctor’s with various ailments which, if you put them together, make a compelling case for a fibromyalgia diagnosis... but that didn’t happen. Instead, I eventually started to develop a burning sensation/pain along my arms, and when I typed that specifically into Google, Fibro came up. I returned to docs suggesting I might have that, and they agreed."
4. Trish, 27, Chronic Lyme Disease
"I was in a college class about religion, the professor was late because he had to move a deer out of the road, and he decided to share his experience with chronic Lyme with us. Everything he talked about, I was experiencing. He said we could talk to him after class, so I did. He told me how to find Lyme doctors who would diagnose me properly and be able to help. This was after 10 years of going to different doctors and being misdiagnosed or dismissed — and I told every single one I thought Lyme was the issue."
5. Laurinda, 25, Goodpasture Syndrome
"After two to three years of being sent for blood tests and ultrasounds for my kidneys, everything came to a head when my legs swelled to twice their normal size. I went to a hospital in Ottawa, ON, where they did more of the same blood tests and ultrasounds. Luckily, one ER doctor had realized I would need to probably do a biopsy and not any more ultrasounds, so he sent me back to my hometown of Montreal and told me exactly what to say, forwarded my file to the Jewish General Hospital, and told me to ask for a nephrologist in the emergency ward.
They took my blood pressure, which was at the stupidly high number 220/194, and had me seeing a nephrologist immediately. He knew what I had just by looking at me and had me start treatments immediately. I thank my lucky stars every day for that emergency doctor's foresight and for my nephrologist and his team’s quick action, because I may not be here today to write this without them."
6. Katie, 32, Endometriosis
"I Googled the symptoms and found a specialist. He verified the diagnosis via surgery."
7. Iesha, 27, Chronic Sinusitis
"Went to urgent care and told them how I've had numerous doctors that haven't told me what's really wrong with me. I demanded an answer because I couldn't take it anymore. I was miserable. I'd have a flare up every month and had three different doctors (within two years) 'treat' my illness instead of curing it."
8. Jen, 50, Myalgic Encephalopathy/Chronic Fatigue Syndrome And Hashimoto's Thyroiditis
"I became ill at 24. I would have random episodes with viral meningitis, 'reversible lupus,' IBS, pseudo gout, bladder and kidney infections, vertigo, migraines, fatigue, multiple chest/lung infections per year, strange rashes, and high-risk pregnancies. I had a positive ANA since I was 24, but I was only diagnosed with and treated for Hashimoto's Thyroiditis after the birth of my son at 32. But I was still sick.
By then I had really given up on being diagnosed; physicians referred me to psychiatrists or told me that I had an autoimmune disease (another one) that would come out 'one day.' When I was 40, I was so ill that my husband, who is a neurologist, recommended that I see Dr. Nancy Klimas, a world-renowned immunologist studying Chronic Fatigue Syndrome in South Florida, where I live. I was lucky enough to get in to see her partner, Dr. Irma Rey. It was the first time someone tested my immune system and put all my symptoms and different episodes of illness together."
9. Christina, 32, Hashimoto's Thyroiditis
"In 2009, I was touring as a singer in a rock band and became so ill that I had to stop singing completely. It became painful just to talk. There were all of these mysterious and unseen symptoms. One day, I remembered my childhood miniature schnauzer, Muffin. She was a bit overweight, losing her hair, and much more lethargic than her brother. However, we didn't think much of it — it just seemed like she was aging. A vet eventually diagnosed her with a thyroid condition, and when we began giving her medication, she turned into a vibrant, lively puppy and literally grew her hair back!
I realized how much I felt as though I imagined she felt. I went to my primary care doctor and described the similarities. Fortunately, she also checked my TPO anti-bodies in addition to the the standard hormone panel. My hormones have remained normal, but the antibodies were off the chart. It's been another nine years putting more pieces together about what that means and how to address my autoimmune condition, but at least I had something to name it!"
10. Samantha, 31, Fibromyalgia and Chronic Fatigue Syndrome
"For the Fibromyalgia, I was diagnosed by two doctors, the rheumatologist and the pain management doctor. But my primary refused the diagnosis and even yelled at me over the phone about it. I've changed primaries twice since then just to find someone who listens and agrees with the diagnosis ... about three years later.
I was never told I had Chronic Fatigue Syndrome. I complained to a doctor that while I was sleeping 12 hour days, I wasn't getting enough sleep. He put me on melatonin and Vitamin D, but nothing worked. When I went back and said nothing changed, he clucked like a chicken and began to type. He said nothing out loud after that other than his sympathies, so I moved to see what he was typing on the computer screen: 'Chronic Fatigue Syndrome.' I'm still in shock that he never said the diagnosis out loud and never gave me information on treatment or self-care. I walked out of the doctor's office in a daze with a paper in hand, and like all curious people, spent countless hours searching the internet to find nuggets of decent information."
11. Maisha, 32, Endometriosis
"I suffered with intense period pain since I was a teenager and then, at the age of 29, began experiencing the pain every day. I found some answers only through doing my own research online and suspected that I had a condition called endometriosis. But I couldn't get any doctors to take it seriously or do the surgical procedure to get it officially diagnosed. Finally, I found an online group where endo patients listed doctors who are knowledgeable about and willing to treat endometriosis. One doctor is a two-hour drive away from me, and I sought him out, told him exactly what I was looking for, and at the age of 31, finally got surgery to diagnose my endometriosis and remove some of it."
12. Rebecca, 28, Narcolepsy
"I was diagnosed after 12 years of voicing the same complaint. The difference was that I finally got a female primary care doctor. I told her that I didn't like going to the doctor and that I wouldn't be there if I didn't absolutely need help. She understood and promised she wouldn't give up on me. So she recommended me to every specialist imaginable, and we ran every test I could afford, from MRIs to blood tests, until they did a sleep study and pinpointed the problem."
13. Christine, 46, Celiac's Disease
"A wholistic nutritionist figured it out after decades of doctors missing it."
14. Autumn, 19, Interstitial Cystitis
"After seeing specialists (strictly urologists and always men) since I was two, I began to research and landed on my diagnosis, giving the doctor I see now (a female urogynecologist) lots of detail, and she ran some tests and officially diagnosed me."
15. Mac, 23, Reflex Sympathetic Dystrophy
"A friend’s mom suggested it — my symptoms matched her relative’s illness. I talked to specialist number… three? Four? And everything clicked."
16. April, 48, Chronic UTI
"I flew from Australia to England to see a specialist who diagnosed my illness by looking at my cells under a microscope. A simple procedure that any lab, anywhere, can perform... but they refuse!"
17. O., 58, Fibromyalgia
"By badgering the doctor until he gave up and sent me to a specialist. That took five years. He thought it was all in my head, perimenopause, stress, sole parenting, being a woman, a cold, etc. Still doesn't believe Fibromyalgia is real. That's OK, I now have a doctor who does."
While dealing with an illness doctors not only can't treat but can't name can be one of life's scariest experiences, it can also be one of the most empowering. Advocating for yourself even when others don't support you and putting your health above everything else will give you strength you'll carry with you for the rest of your life.