Recognizing You Have a Chronic Illness Like RA Is Difficult
It’s Summer 2018. Someone asks you why you’re wearing a wrist brace on your right arm. You’ve just bought said wrist brace in a Boots Pharmacy in London, England, and you have no idea where to begin explaining your story or how to even talk about what’s going on. The reason for this being: you don’t even know that you have rheumatoid arthritis (RA). All you know is that something is wrong. And you’re scared.
Symptoms of rheumatoid arthritis
This was the position I was in before I was officially diagnosed with RA. Before then, I had experienced a wide array of symptoms, and I’d like to share a few of those symptoms (mostly those that are associated with specific stories).
The reason I’d like to share these stories is both to help me process what happened — which I’m doing every day — but also to provide an opportunity for other community members who maybe don’t know that they have RA, but are experiencing the same thing or issues.
When I knew something was wrong
I’ve always found it interesting that the progression of my rheumatoid arthritis happened at the same time that I was traveling in London. This was supposed to be one of the happiest times of my life, and it was, in some ways.
But the first morning that I knew something was wrong with my body was waking up and not being able to get out of bed and walk across my flat to get to the bathroom. The joints in my feet were too swollen and in too much pain to be lifted to carry me across the room. Instead, I essentially had to shuffle and slide my feet together for over an hour before I could start feeling some relief. I couldn’t really fit my feet in my shoes because they were so swollen.
Limited motion in my arms and wrist
In addition to the swelling of my feet, I often would not be able to lift my arms above my head. This was discovered when, one morning, I found myself unable to reach my right arm over my head to wash my left shoulder. I couldn't even bend my wrist to wash my body. It felt incredibly humiliating and embarrassing, even though no one else knew that I was suffering so.
I didn't want anything to be wrong with me
My immediate reaction to this pain was to swiftly deny and squash it. I was in London. There wasn’t any room for pain, for feeling bad. I was supposed to be having fun at Tate Modern, sipping lattes and taking in English culture, laughing, and having a great time. On the outside, I think I projected that. On the inside, I felt like I was dying. I felt like my body was turning against me.
I recognize now that there was an element of stigma present in feeling like my body was turning against me. It’s definitely true that autoimmune conditions like rheumatoid arthritis do attack your body and your immune system functioning. But I think what I was dealing with was this sense that I didn’t want anything to be wrong with me. I wanted to feel good and wanted to get rid of this omnipresent sense that there was something wrong with my body.
Still accepting my RA diagnosis
That was in June 2018. I wouldn’t be diagnosed until October 2018, some four months later. The pain only got worse from June — however, the feeling of something being wrong with me still hasn’t gone away. Even though I have a name for my condition, for the pain I experience on a daily basis, I am still finding ways to accept that I have rheumatoid arthritis and that this will stay with me for the rest of my life.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?