Call Me Rexie: My Journey to a Rheumatoid Arthritis Diagnosis

Photo by Dan Meyers on Unsplash

It all began with my hip. While in high school, track introduced me to the freedom and pleasure of running. When I began college, I found other folks who also liked to run as a means of socialization and exercise. Into my second year of college, my hip started to hurt. I went to the campus clinic and began a long career of stumping doctors. They could not figure out what was wrong. I was sent to physical therapy to get stronger. The pain went away for awhile, but it came back whenever I tried to run. I ran as much as I could, but I was beginning to wonder if running was something I could continue to do. Over the next few years I went to more doctors and I was prescribed anti inflammatory medicine, advised to use walking sticks at all times (oddly I could not bring myself to do this), had an MRI conducted, and almost underwent surgery to repair cartilage in my hip (thankfully it was determined at the last minute that the diagnosis was inconclusive). After all of this, I decided to give up running. It was the only thing I could point to to be causing the issue. There were other forms of exercise. The pain went away and I did my best to move on from running. 

Three years later I began to have pain in my knee. It was subtle at first, but slowly became more painful and swollen to the point that walking became quite difficult.  I assumed I slept funny or twisted my knee a bit while exercising. Eventually it went away and I assumed everything was back to normal. Then my wrist swelled up. My office was getting ready for a remodel and many items needed to be moved to temporary storage. I assumed I was getting tendonitis from repetitive physical work. I bought a wrist brace. Then it moved to my other wrist. Still not terribly strange. I bought another wrist brace. Then it moved to my shoulder, locking my arm into my body with mobility being restricted to my forearm. My other shoulder swelled up soon after. The strangeness of this wracked my brain and began to fill me with fear. Why on earth would my joints be behaving as if they had been injured when I know for a fact they have not? I realized this was not a fluke; something was very wrong.

My mental state was understandably agitated. I was afraid, confused, frustrated, and embarrassed. On top of it all, I was in pain. Pain that persisted, even at complete rest as I tried to sleep. I discovered that pain, fear, and lack of sleep quickly open the doors to despair. In the midst of all of this, I went over to visit two good friends to play a board game. I informed them of my condition, and as my friends will do, they decided to lighten the situation through humor. While observing me trying to throw dice without extending my arms from my body my friend chuckled and said “you’re like a T-Rex. I am going to call you Rexie.” I looked down at my absurdly flapping forearms and laughed too. This was a gift. I still felt, fear, confusion, frustration, and embarrassment, but the moment of grace that laughter provided gave me the courage to go to the doctor.

Photo by Abby Anaday on Unsplash

I did not have a good feeling about going to the doctor with these symptoms. The memory of the slew of doctors visits for my hip was fresh in my mind. Unsurprisingly to me, I stumped my General Practitioner, and then the Rheumatologist she sent me to. The problem was that while my blood work showed signs of Rheumatoid Arthritis (RA), my symptoms did not exactly match. My Rheumatologist was not convinced of a RA diagnosis, and even as I sat in front of her in pain, fear, and confusion, she emoted skepticism and no discernible compassion. At the time, I thought she believed I was faking. This was extremely frustrating and embarrassing. I honestly began thinking no one would find an answer and that continuing doctor’s visits was pointless. Thankfully I decided that my symptoms were too debilitating to stop trying. I went back and forth to the clinic for six months until my Rheumatologist ordered an MRI. My wrist was swollen during the MRI and my Rheumatologist was able to see a buildup of fluid in my joint. She was finally convinced I had RA. I understand now that autoimmune diseases are difficult to diagnose. My Rheumatologist wanted definitive proof before deciding on a diagnosis. However, I hope not all Rheumatologists treat their patients with the same skepticism and I strongly encourage everyone to try and find a doctor they are comfortable with.

After I received the diagnosis I was able to breathe again. I did not have a mysterious illness that can never be solved. Rheumatoid Arthritis is a condition where a person’s immune system mistakes the membrane that produces your joint’s lubricating fluid as a harmful substance. The body’s immune system then attacks the membrane, as it would any other harmful substance in the body. Unfortunately, this causes the membrane to produce an excess of lubricating fluid, which causes the joint to swell and become painful. The swelling can cause damage to the joint over time. It is not known what causes the disease, but genetics are a factor. (For a more complete summary of the disease, click here).

Unfortunately, while this was a diagnosis of a condition that is treatable, there is no cure and joints can become damaged over time. My relief at a diagnosis quickly changed to deep foreboding. Moving my body, especially with aerobic exercise, is one of the most important ways I cope with my two other chronic conditions: depression and anxiety. On top of that, there are many treatments and it would take time to find one that would work, if we could at all. Even if successful treatment is found, it will likely have side effects that can cause disruptions in the body. I was beginning to see that this diagnosis was only the beginning of something quite difficult, similar to my diagnosis of depression and anxiety. Uncertainty loomed ahead. This was not something I was ready to face. I was too young to not be able to use my body for my desired activities. I didn’t have time to focus on treatment with all the other obligations that consumed my attention. I could not comprehend how I was going to be able to manage this condition.

Life changing events never come when you are ready.

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