The Double Whammy: Living With Lupus and Rheumatoid Arthritis
For those who think that having Lupus and Rheumatoid Arthritis are mutually exclusive (can’t occur together, in this case, in the same body/person), they’re wrong. It is possible to have both of these illnesses. I should know, because I do.
It’s one of those things that tells people you’re a really intense person. Like, oh, when you do something, you do it all way, right? Yes, getting Lupus and Rheumatoid Arthritis were my ultimate goal in life. Is there anything better?
Okay, sorry, I’m being a bit snarky here. The reality is, we deal with the hand we’re dealt. But it definitely sucks sometimes. If it’s not one thing, it literally is the other. The winter months are particularly bad for my Arthritis, and the summer months are particularly bad for the Lupus. There truly is never a day off.
The very brief version of what having these two illnesses means is: Rheumatoid Arthritis affects joints and Lupus affects tissues (muscles and organs). This basically means that all of my bodily systems are involved in disease mode.
It’s not like love and marriage. You can have one without the other. And if you have the choice, I would certainly say pick one, not both.
As much as my life doesn’t make sense with these illnesses, in many ways, it does. I knew that when I was first diagnosed, I didn’t simply have Rheumatoid Arthritis. Yes, I had the joint pain, swelling, and deformity. But I also had this constant feeling of being nauseous and dizzy. The best way to describe it is that I felt like I had been hit by a Mack Truck, like someone had plastered me against a wall.
For me, Lupus and Rheumatoid Arthritis are pretty much equal opportunity offenders. I can’t say that there is a part of my body that hasn’t been affected by one or the other. I imagine little gnomes with chisels, pounding away at my knee caps, while a wave of nausea hits me so hard that it stops me in my tracks. I’m not crazy, just imaginative.
The very first label that was put on me when I was trying to get diagnosed was Undifferentiated Connective Tissue Disease. This means that you have features of several diseases, but not enough features to be diagnosed with any one in particular. This is a very vague classification, obviously, and to me, this is just a fancy way for a doctor to avoid coming up with a firm diagnosis.
When I was first diagnosed, I was told that I had Rheumatoid Arthritis only. Although I am not a doctor, this honestly didn’t explain all of the symptoms I was having. I was subsequently diagnosed with Systemic Lupus. This is known as Overlap Syndrome. It means that you have enough of the diagnostic criteria to be diagnosed with both illnesses.(Overlap Syndrome should not be confused with Undifferentiated Connective Tissue Disease)
The reality is, though, that while having these two illnesses together is rare, having multiple autoimmune diseases is not. They seem to come in droves. I also show symptoms of Raynaud’s Phenomenon, and at one time or another, have shown symptoms of potentially other diseases.
I think that most of us with autoimmune diseases stop counting and cataloging. We tell people our main problems, but listing, let alone living with all of them, is exhausting, to say the least. So for me, Lupus and Rheumatoid Arthritis steal the show.
Everyday, I’m growing into this body and this life. Some days are harder than others, and I have to be ever-vigilant about monitoring the symptoms and course of these diseases. At this point, most of the time I can differentiate between which disease is causing my symptoms; sometimes, not always. The pain of joint damage is different from the pain of a fatigued muscle, at least to me. And with Arthritis comes pain. With Lupus comes a general feeling of being unwell.
My body consistently seems to enjoy putting me in the 1 percent. So on a good day, I’ll settle for being unique.
This may be a bit more abstract than what you were hoping for, as far as the experience of having both Lupus and Rheumatoid Arthritis is concerned, so feel free to ask me questions, and I will be more than happy to answer them.
Leslie wrote for HealthCentral as a patient expert for Rheumatoid Arthritis (RA).