Nothing can prepare you for the feeling that your body is failing you. A few months ago, my shoulder began to ache, a deep burning pain that wouldn’t subside no matter how much rest I gave it. Then, my other shoulder followed suit. I didn’t give it much thought initially because shoulder pain and surgeries run in my family, but then my hands and feet started to feel numb and tingly. One night my knees swelled up and felt warm to the touch. So, I did what almost everyone does when mysterious symptoms manifest and consulted Dr. Google. That is where I first began to delve into the complicated world of autoimmune diseases.
At first, I was convinced I was experiencing hypothyroidism, a disorder in which the immune system attacks the thyroid gland, causing symptoms such as weight gain, fatigue and joint and muscle pain. I met with my primary care doctor and we discussed having some blood work done. As the appointment drew to a close a thought crossed my mind. In truth, it was something I kept coming across online but was afraid to even voice because the idea of facing this disease terrified me. “Is there any way it could be rheumatoid arthritis?” I asked the doctor. “Absolutely,” he responded and added additional tests.
My blood work came back to show normal results for a myriad of thyroid tests, but there was one number that stood out in red and sent a shock down my spine — a positive rheumatoid factor. Visions of deformed fingers flashed through my mind. I knew enough about rheumatoid disease to know that it could lead to deformities, surgeries, and disability; a terrifying thought for a 36-year-old active woman with three sons to take care of.
Rheumatoid arthritis is an autoimmune disease in which the body’s immune system — which normally protects its health by attacking foreign substances like bacteria and viruses — mistakenly attacks the joints. It can lead to joint damage and deformity that cannot be reversed and is a systemic disease that can also affect the cardiovascular or respiratory systems.
After reviewing my blood work, I met with my doctor to discuss the results and he told me he would refer me to a rheumatologist. As it turns out, getting a proper diagnosis for an autoimmune disorder can be very complicated, time-consuming and expensive (and I was one of the “lucky” ones who had a positive blood test result). Women are four times more likely than men to develop an autoimmune disease, and the risk of death increases if you have one. Additionally, recent reports show that women’s pain is often not taken as seriously as men’s pain by doctors, so that can lead to a delayed diagnosis. Another obstacle is that there is currently a shortage of rheumatologists in the US, so many patients often wait several weeks or even months for their initial appointment. With rheumatoid arthritis, early diagnosis and intervention can be crucial to prevent joint damage and even deformity. My primary care doctor warned me that it may take some time to be seen by a rheumatologist and sent referrals to more than one specialist to move the process along.
As I waited for my appointment, a part of me held out hope that maybe this would all go away, and that I was one of the rare people who had a positive rheumatoid factor without a disease. After all, I didn’t even have the typical symptoms. Then one day, while sitting at the park, my hand began to ache and cramp up. It was an unusually cold spring day, but I knew deep down that the cold alone didn’t explain the issues I was having with my hand that continued to hurt throughout the day. About a week later, I spent a night tossing and turning due to foot pain. The next morning, I was disturbed to find one of my toes swollen. I have since given it the nickname “little sausage toe” as it has yet to return to normal. The pain that moved throughout my body every day was one thing, but the fatigue that came along with it proved to be debilitating for me. I am familiar with functioning while being very tired — after all, I am a mom who survived parenting three colicky babies, but this constant fatigue was different. I felt as though I was coming down with the flu, that achy tired all over feeling (and slight fever) that never went away.
The day for my appointment with the rheumatologist finally arrived. At this point, I had already come to a place of acceptance that I would most likely be diagnosed with a disease that would change my life, and that is exactly what happened as the doctor confirmed that I have rheumatoid arthritis. I felt numb and overwhelmed as I drove home that day. I knew that this diagnosis was not a death sentence, that there were millions of people out there who faced more difficult struggles than me, but it’s still been a lot to process. I have had to mourn the loss of the person I was before, a person who took her health and vitality for granted.
I am still working on making adjustments. Learning not to push my body too hard has been difficult, having to tell my boys “Mom needs to rest for a minute.” Today I am much more careful about the food that I eat and the way that I move and exercise, which helps me to feel more in control but there is always the fear right below the surface.
Currently, I am in the early stages of this disease and my rheumatologist says that I can wait to take the strong “chemo” meds for now that are immunosuppressants and would leave me vulnerable to all kinds of infections. He also mentioned that there is no way to know how slowly or quickly things will progress. So, I’m trying not to take anything for granted. I find that I am no longer as concerned about how my body looks; that seems so trivial now. I just want to be as healthy as I can for myself and my family, and hopefully be an advocate for the millions of people living with an invisible illness every day.
A version of this article was originally posted in June 2019.
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