When RA Severity Is Off the Charts

First, let me start by stating that every person with RA is unique and must grapple individually with pain, stiffness, joint problems and all the complexity of the disease. No case is the same, yet every case is challenging. So many people struggle with feeling invisible and hidden because their disease may not be observable to others, yet it is a serious and destructive illness.

My RA is visible

My uniqueness comes from having an extremely visible disease. I use a motorized wheelchair and have apparent joint deformities. I have never met anyone with a case like mine. In many ways, I am an outlier.

I am good with my particular uniqueness, but I really don’t know how my RA can be categorized. There’s an ad I see a lot on television that talks about a drug for “moderate to severe rheumatoid arthritis” featuring a woman who is helping to build a house. I know a lot of my friends with moderate to severe RA may not have visible symptoms, but they are not going around building houses! Frankly, that is ridiculous!

So what do the ads think moderate to severe RA actually means? And what does this mean in the real world? And where do I fit in this spectrum?

I have a joke with my husband when we see this commercial that I must be in the “oh my sweet lord” category. The labels just do not seem to apply.

On one hand, I don’t like to be measured, categorized, and boxed. I’m always the person who’s thinking: “Don’t you dare limit me or think you know just who I am and what I am capable of!” I probably go overboard in not wanting people to think they have me figured out.

Yet part of me longs for someone to say: “You belong here, in this category, and it is just right.” I think I want that so that I have some sort of confirmation that I fit someplace.

Yes, my RA is severe.

Yes, it is visible. Yes, it is unique to me and my experience. I can check these boxes, but it doesn’t get me any closer to a label or category.

Every case of RA is individual. The medical establishment has measurements and ratings, but the labels don’t really work. I may be off the charts in some way, but someone else is off the charts in another way.

RA severity is in many ways immeasurable because it has so many variants. Some people struggle most with the pain, others with stiffness. And most of us experience a cluster of symptoms that are endlessly shifting and competing for our time, energy, and attention.

Maybe it is best to just throw out the charts. They don’t seem to do us much good. I laugh at the television commercials for RA drugs because they don’t seem to get close to portraying the true struggle of living with this disease. But then again, when you are feeling unwell (or frankly, terrible) does it really help to have someone else point it out? Sometimes this just makes me feel worse.

It’s almost as if not having a proper label or category liberates me. No one can tell me how “severe” my condition is or tell me that I cannot do something I want to do. They just have no idea because I have no proper label.

I know my condition is unique and all my fellow RA friends have their own different experience with the disease. I value the differences in perspective and am glad that we don’t really need the labels because we are finding our own way without them.