Why I'm Sharing My Journey With RA for Rheumatoid Disease Awareness Day

February 2nd is Rheumatoid Disease Awareness Day and every February 2nd patients are asked to tell their story to educate and raise awareness. This year I have decided to share my story more publicly in the hope that other rheumatoid arthritis warriors feel inspired to share their stories in order to bring awareness and education to those around them. As much as one percent of the world’s population is battling it out with RA and I am just one face of this disorder.

I was 30 years old when I knew something was not right. I had suffered from back pain, neck pain, rashes, shoulder pain, feet pain, sore throats and hand problems for months before I decided I needed to see a doctor. I saw a primary care doctor (not my usual doctor as he was out of the office that day) about a neck ache. The doctor I saw told me my neck issues were stress-induced. I bought that lie for a couple of months – after all, who isn’t stressed? Maybe that was my problem. But then my hands started to swell, right first and then left. “Ugh, carpal tunnel,” I thought since I had been a legal secretary for years. But it wasn’t just my hands that were swollen – my knee was swollen, my shoulders would not function and my neck still had issues.

I then began to notice that I couldn’t hold my toothbrush to brush my teeth, I couldn’t hold silverware or cut food, and I couldn’t raise my shoulders in the shower to wash my hair (forget trying to blow dry and style it). I was short of breath, dizzy and exhausted. But it wasn’t until the day I drove to work, parked my car on the fourth floor of the parking garage and then struggled to move my hand to turn the ignition off and remove the key that I knew something was not right and I needed help. I went into my office and called my primary care doctor. He saw me the next day.

My primary care doctor had gone through all of my sore throats and rashes with me. I had a yearlong history with those issues. He looked at my swollen joints and listened to me. I told the doctor I was afraid to have carpal tunnel, since after all, I worked in the workers’ compensation industry and the last thing I wanted was a claim. He told me he thought it was something more than carpal tunnel… he was going to test me for rheumatoid arthritis. I remember looking at him, having no idea what RA was and saying, “Well of course I will get arthritis, I am a secretary” (imagine a sarcastic 30-year-old).

I vividly remember the day I got a call from the doctor’s office after my blood tests. It was about a week later and the nurse asked me to come in that afternoon. She said the doctor needed to talk with me. Those are the calls no one ever wants to get. I showed up and the doctor sat down to show me my blood work. He showed me the rheumatoid factor and inflammation levels in my blood and said he was sorry. But why was he sorry? I still didn’t understand. I asked if I would take a pill to make it go away. He looked at me and explained RA and handed me a pamphlet. He explained to me that it wasn’t really arthritis at all – that was only one symptom. What!?! He couldn’t be right, I was only 30 years old, almost 31. I sat in my car in the doctor’s parking lot and cried. I called my husband first to tell him what the doctor said. Next call was to my mom; as I held back tears I told her I had RA. It was a shock to those around me because I never really let on to how much pain I was in or how much my life had become impacted by the suffering I felt in my body.

What is rheumatoid arthritis? Well, like the doctor told me that day, arthritis is only one symptom of this disorder. Rheumatoid arthritis, or RA, is an autoimmune disease, which means the immune system that is supposed to protect you turns on you and begins to attack your own body. The treatments for RA are immune suppression and many patients use a chemotherapeutic agent in a low dose. Since it is not well understood as to what part of the immune system has gone haywire, the low dose chemotherapy is used to turn the whole immune system off. RA doesn’t just affect the joints but also attacks the lungs, heart, eyes and skin. There can also be vascular manifestations of RA. Some patients have feisty immune systems so the medications don’t fully do what they are supposed to or it takes a long time to find the right combination of medication to treat the issues RA has caused.

Rheumatoid arthritis feels like you are sick with the flu. It is that totally exhausted feeling plus the feeling of soreness the day after a long workout where every joint in your body hurts. It is extremely painful and mentally exhausting because there is often no rhyme or reason to bad or good days. It is a chronic illness and there is currently no cure for RA.

Fellow RA warriors, I want to encourage you all to share your story this February 2nd to educate and bring awareness to the beast that changed our lives. With our words, our stories and our experiences we can put a face to rheumatoid arthritis. What’s your story?

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