Thursday, January 23, 2014

Is It More Lupus Than RA Or More RA Than Lupus?

When I began seeing my new rheumatologist, I was worried that she might disagree with my diagnoses. And that’s a very scary prospect. I feel like I’m finally at the point where I’ve made peace with my diagnoses. They are a part of my life and a part of who I am, and I have, for the most part, accepted that. So it was scary to imagine what would happen if I was suddenly told that I have something other than what I think I do.

It’s not that I don’t trust my last rheumatologist, I think it’s just a risk you take whenever you start seeing a new doctor, and this is my first time doing it since I got sick.

And that didn’t happen…exactly…

So when my new doctor told me that she feels my primary disease is lupus, with secondary RA, I felt a little jilted. This is not how I have viewed my diagnosis. I have tried to view my illnesses as equal, although like I said before, I have steered a bit more toward the RA community.

But why is that? It’s not as if I can measure and quantify the impact of each illness on my body, although I can categorize the symptoms (sometimes).

And I absolutely hate the phrase “mixed connective tissue disease” or “undifferentiated connective tissue disease”. I’ve always felt that these phrases are a copout for actually providing a definitive diagnosis.

Is this a game changer? No. Not really.

In some ways, these are facts that I’ve always known. I have lupus AND rheumatoid arthritis. I own those diagnoses.

What I’m not always able to tell is which disease is flaring. And usually I get it wrong. Usually my doctor will disagree with me.

But when I think back to my initial diagnosis, I think back to the fact that when I only had a diagnosis of RA, it didn’t feel quite right. It didn’t feel complete, like there was an important piece of the puzzle missing. And that piece was lupus.

So is there any harm in my new doctor viewing lupus as the bigger issue? I guess not. I guess it’s more of a mindset than definitive, considering that I have always had enough markers to be diagnosed with both illnesses.

And I’d like to think that our memberships in these communities are less tenuous than our ability to fit into a certain illness box. It’s not like I’m an RA sympathizer or an RA imposture. I HAVE RA. And I HAVE lupus. But more importantly, these are autoimmune diseases, and also chronic illnesses. Those things haven’t changed.

 So while my last rheumatologist treated me aggressively for RA, my new rheumatologist wants to treat me aggressively for lupus. And maybe that’s the trade off when you have multiple chronic illnesses. Because ultimately, I don’t really care which one we treat, as long as we don’t make the other one worse.


  1. You are an inspiration. I love how you own your diagnosis. I hid from mine for so long and only in the last year or so really felt comfortable talking about it. Your blog has helped a lot for me to become more confident about not being afraid of my illness. Its a part of me and that is that. Thank you so much.
    -Fellow RA patient, Stephanie

  2. Going to see a new rheumatologist next week. Want to confirm my diagnosis of RA and see if it's a better fit personality-wise. Don't think my current doc is hurting me, but always feel intimidated by him. Feel he talks in circles and acts as though I should know what he is saying. Never much of an explanation. My question is this, can you give me any advise on things to remember to ask when seeing a new rheumatologist? Thanks.

  3. You're inspirational. It takes a real strong spirit to own their diagnosis because it's such a difficult process. I know how terrifying it can be going to a new doctor, because each doctor's opinion is different about the same person's diganosis. It's just most important that you trust you and your body and what you know (while still listening to the doctor). I love your blog. It's so great.