About 10 months ago, I knew something wasn’t right with my body. It felt as though I had aged 30 years in the span of a few months, and that my “check engine” light was blinking, demanding attention. The symptoms had begun innocently enough. My shoulder would ache, but then it became a deep burning pain that went on for weeks. Around the same time, I began to experience weakness and numbness in my hands and feet, followed by swelling in my knees and toes for no discernible reason. I was constantly running a slight fever and always felt as though I was coming down with something ― that achy, all-over fatigued state of being right before the flu hits you with full force, only the flu never came and the symptoms continued. I knew it was time to find a doctor, and yet I was hesitant. “Would they take me seriously?” I wondered.
My experiences with the medical community haven’t always been positive. In fact, there have been many times I have been made to feel as though I’m being “dramatic” or that symptoms I was experiencing were psychosomatic. When I went to a gastroenterologist when I was 18 to address my chronic stomach pain, bloating and digestive issues, I was diagnosed with Irritable Bowel Syndrome and prescribed an antidepressant. IBS is a blanket term, and the medication left me feeling numb, but did nothing for my colon as promised.
Years later, when I was struggling to get pregnant and suffering from intermittent sharp pain in my abdomen, I was told that I had a couple of very large cysts but was not informed until much later that I have polycystic ovary syndrome (PCOS), a hormonal disorder that is one of the most common causes of infertility in women (and causes myriad issues and symptoms).
“My experiences with the medical community haven’t always been positive. In fact, there have been many times I have been made to feel as though I'm being 'dramatic.'”
These instances are mild compared to many others, I’m well aware, but I have consistently felt overlooked or placated by doctors when expressing pain or other symptoms that interfere with my quality of life, and I don’t think I’m alone. The overriding message always seemed to be that these were just issues that I was going to have to learn to live with and maybe I was depressed.
Of course, I have also had positive experiences with excellent doctors and nurses (my husband is even a mental health nurse), but I’ve always felt hesitant when seeking medical attention because I don’t want to be labeled as needy or a hypochondriac (even though I have never once asked for pain meds).
Studies have shown that women’s pain is often downplayed, dismissed as psychological or emotional, and not taken as seriously as a man’s pain. According to Harvard Health, “Women in pain are much more likely than men to receive prescriptions for sedatives, rather than pain medication, for their ailments.” A woman waits about 65 minutes to a man’s 49 for treatment in emergency rooms after presenting with acute abdominal pain, and then is prescribed less pain-relieving medication. The discrepancies are even greater for women of color.
“I have consistently felt overlooked or placated by doctors when expressing pain or other symptoms that interfere with my quality of life. and I don’t think I’m alone.”
This time around, I was determined to be my own advocate and find an answer for my pain. My most pressing issue initially was shoulder pain that had intensified to the point where I had little use of my left arm, and my right shoulder was beginning to hurt as well so I made an appointment with an orthopedic doctor. He looked over my X-rays, asked me some questions and manipulated my arm around. The pain this caused was searing and I also immediately felt a numb, tingly feeling throughout my body. Then, my vision became cloudy and I felt as though I was going to pass out.
“You need to lie down, all the color has drained from your face,” he told me. I did as instructed, but he didn’t seem too concerned with my X-rays and told me I had some tendinitis and bursitis in my shoulder. He recommended physical therapy and sent me on my way. I thought more was going on because of my complete lack of mobility and the fact that these issues didn’t explain the numbness that had started in my feet and hands but continued to spread throughout my body.
He mentioned it could be caused by carpal tunnel syndrome, a condition that causes numbness and tingling in the hand and arm due to a compressed median nerve, but I had experienced this condition while pregnant and tried to convey to him that I was sure it wasn’t carpal tunnel because my weakness was not limited to my hand and arm. He told me he would order a nerve test. When I went to have the costly test done, the technician informed me it was a test for carpal tunnel. I felt like the doctor hadn’t listened to me at all.
“I knew I needed to reach out to my primary care doctor, and I was going to go in prepared.”
I had a little more luck with the physical therapist. Right from the start he told me, “It’s a really good thing you came in here. You were very close to having a frozen shoulder.” He also mentioned how unusual it was that I had experienced pain for weeks and limited motion in both of my shoulders without any kind of accident or trauma. When I asked about the constant numbness, he told me that was very uncommon as well. It was enough to convince me (along with other symptoms I was experiencing) that more was going on with my body, that I needed to reach out to my primary care doctor, and I was going to go in prepared.
I did some research beforehand and showed up at the doctor’s office with a list of my symptoms. Due to my family history, we both thought it could be an issue with my thyroid — likely Hashimoto’s disease — but my doctor also noted, “Sometimes we just feel this way because we are getting older.”
I was not taking that for an answer and my doctor, to his credit, actually listened to me and agreed to run several blood tests to check my thyroid. Before the appointment was finished, I asked him if there was a chance that it could be rheumatoid arthritis (RA), an autoimmune disease. He said, “Absolutely,” and added on several more blood tests. One of those tests ended up showing a positive rheumatoid factor, a sign that could indicate an autoimmune disease, so he gave me a referral to meet with a rheumatologist.
RA is a disease where the body’s immune system — which normally protects the body by attacking foreign substances like bacteria and viruses — mistakenly attacks the joints. It can lead to joint damage and deformity and is a systemic disease that can also affect the cardiovascular and respiratory systems.
On the day of the appointment, I was apprehensive — even downplaying my positive blood test result and telling the rheumatologist my number wasn’t “that high.” He informed me that zero was normal, that I had swelling and fluid around several joints, and that I was a “classic case” for RA.
I experienced a range of emotions upon receiving this diagnosis, but at the forefront was relief. This time I had an answer for why things felt off with my body and I wasn’t “crazy” or being dramatic!
“It wasn’t until I was diagnosed with a chronic illness that I felt like doctors believed that something was wrong with my health, and, in a bizarre way, that actually gave me hope.”
I have always believed that my health issues are interconnected. There is evidence that PCOS may be an autoimmune disorder, and that if you have an autoimmune disease, you may be more likely to have IBS. Additionally, 25 percent of patients with autoimmune diseases have a tendency to develop additional autoimmune diseases. It wasn’t until I was diagnosed with RA that I felt like doctors believed that something was wrong with my health, and, in a bizarre way, that actually gave me hope.
My life has changed since receiving my diagnosis. I experience daily pain that moves throughout my body and a fatigue that makes me feel much older than my 37 years. The first virus I caught after being diagnosed led to months of coughing and eventually costochondritis, which is inflammation of the cartilage that connects the ribs to the breastbone. It progressively worsened until I was treated with steroids to get the flare got under control. I live in fear of enduring multiple surgeries, of possible future disabilities and deformities and of my increased susceptibility to infections.
Along with the fear, however, is gratitude. I am grateful to have a diagnosis because 75% of Americans with an autoimmune disease are women, and it takes them an average of three years (and four doctors) to get a correct diagnosis.
After I was diagnosed, I joined a couple of online support groups. Recently, I asked other women with RA if they ever felt like their pain was dismissed by doctors, and what it took for them to get a diagnosis. I quickly noticed a common thread in those who responded. Some said they had positive experiences and were able to get diagnosed fairly quickly, but for the vast majority, it took years to receive a proper diagnosis, years of doctors attributing their pain almost always to psychological reasons. The number of women who were told to talk to a counselor or referred to a psychiatrist was astounding. Anxiety, trauma and depression were constantly mentioned as root causes for the symptoms these women were experiencing. Not only is this sexist, it can be dangerous. RA is a disease that often needs to be treated quickly and aggressively in order to prevent irreversible joint damage and deformity.
Living with a chronic illness is something I am still coming to terms with. The fact is, I’d felt that something wrong has been going on with my body for a long time before I received this diagnosis. Women know their own bodies, and we must advocate for ourselves and our health care. Having a diagnosis means that I know what I am facing, and am able to get the treatment necessary to live as normal of a life as possible.
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