Seronegative RA and Its Repercussions

Seronegative. What does that word mean? While it may sound like something you don’t want to catch, it actually is just a fancy word for the fact that some people who suffer from rheumatoid arthritis RA can’t actually prove it on paper.

A variety of tests to diagnose autoimmune disease

Some variants of rheumatoid arthritis and other autoimmune illnesses are unique in a very special way — they are identified using a "diagnosis of exclusion." Usually, rheumatoid arthritis and related autoimmune disease can be tested for. There is the rheumatoid factor (RF) test, which looks for a marker in the blood that is associated with autoimmune arthritis. There is also the ANA test, the antinuclear antibody test, which looks for certain signs that your body is suffering from an autoimmune disorder. There is even the CRP, or c-reactive protein test, which can show inflammation related to RA and other autoimmune diseases.

The doctor, usually a rheumatologist, will use the results from these tests and their years of experience to determine when and if a patient has rheumatoid arthritis or a related illness.

A diagnosis of exclusion

The thing is, for those of us with seronegative RA, none of the above tests are an option because we were diagnosed with the disease based on the fact that it probably isn’t anything else, so it must be RA.

Yup. That’s a diagnosis of exclusion. Medical professionals rule out all the things it isn’t in order to determine what it is. Basically, it’s the medical equivalent of, "Well, we don't know what the hell is wrong; we only know what isn’t wrong, so we’re just going to call it seronegative RA."

It’s true – there is a significant portion of those of us who suffer from rheumatoid arthritis who have never shown a single blood marker for the disease and likely never will. As you can imagine, this comes with a very specific set of issues that can make life with autoimmune disease that much more difficult.

Encountering medical gaslighting

The first and foremost issue is that, without actual, medical proof, it’s almost impossible to get doctors to listen to you. Virtually immediately, when you complain of pain and discomfort and nothing shows up in the blood, the docs can play the "It may be psychological" card. Yeah, that ol’ chestnut. Anyone in pain loves to hear, "Oh, it’s just in your head, so just stop feeling the pain and then it will be gone."

Well... gee, doc... if I knew it was that easy, I wouldn’t have hobbled my way in here with crutches and used these 2 ankles that look like tiny red balloons and are putting out enough heat for me to take a second job as a space heater! I’m so glad we got that sorted out!

Other doctors might blow you off if they can’t see tangible numbers in the blood work. It took me and my parents 2 years to find a doctor who even said the words "rheumatoid arthritis" and didn’t tell my mom that the problem was "A little too much mothering.”

Seronegativity can impact our mental health

In addition, it’s not just the doctors who have doubts when the tests don’t come up positive. It can really take a toll on the mental health of the patient – by which I mean you. Yes, think about it: You know something is wrong and things are obviously happening to your body, but when they test you, it comes back all negative. That can really wreak havoc on the self-identity and disease confidence of someone with chronic illness.

Difficulty knowing if a medication is working or not

Another issue with seronegative cases such as myself is that it can much more difficult to tell if a medicine is working or not when there’s no clinical metric to monitor it. Literally the only thing we can utilize to know if a medication is working or not is if it "feels like it."

Seriously, I’m not kidding – doctors have asked me before just that: "Does it feel like it’s working?" Well, gee, doc, I don’t know. I thought it was yesterday, but then I woke up today with a big fat nodule on my pointer finger like I’m a witch from Hamlet. Oh, also I can’t seem to keep my eyes open after a double shot of espresso with 17 packets of sugar and my left knee is turning purple. Does that mean it’s working?

Yeah, just a fantastically ingenious scientific method that is, but many times it’s literally the best method available for knowing if a treatment is working when you are seronegative.

Advocating for ourselves as seronegative patients

As you can see, the drawbacks of having seronegative RA or any autoimmune illness are numerous and complex. From diagnosis to treatment, the lack of blood markers makes everything that much more difficult, and precious time that could be spent on meds, mitigating the damage, is wasted.

All the more reason seronegative patients have to learn how to self-advocate from the get-go. Talk soon.