The Confusion of an Autoimmune Diagnosis
Fewer things are as nerve-racking as seeing a doctor for something that is bothering you only to leave the office with no answers. You and your doctor are stumped. While you can’t quite put your finger on it, you just know something isn’t right.
Doctor after doctor give you their thoughts: Chronic Fatigue Syndrome, vitamin D deficiency, thyroid problem. But nothing quite fits your list of ails.
You search the internet and lose nights of sleep wondering what is happening in your body. “Why am I so tired all the time?” “Nothing can quench my thirst.” “Yesterday I was fine but today the pain is so unbearable, I can barely get off the couch.”
Finally, after months of clinic visits and tests, your doctor reaches a diagnosis: Lupus…he thinks.
One test shows lupus. Another shows Sjogren’s Syndrome. One shows both. A couple show nothing at all. All they can tell you for certain is that your rheumatoid factor just isn’t right.
While being diagnosed with any disease is a scary experience, receiving the diagnosis of lupus or Sjogren’s Syndrome carries with it so many unknowns. The research in this area of autoimmune disorders is still fairly new and many doctors admit to facing the ailments with confusion. Drugs upon drugs are still being tested and as the rheumatologist writes out a prescription, you can’t help but feel a little like a guinea pig.
Yet Another Specialist
While you and your rheumatologist have become quite close over the course of a few months, you also grow weary of the ophthalmologists (eye doctor), dermatologists, and neurologists. Blood tests and scans galore fail to show you causes or treatments. Rather they just confirm the pains and discomforts you feel daily.
Despite seeing all the specialists, going through all the tests and skipping around natural remedies and medicinal hypotheses, every day you are still filled with questions about what is happening and what is to come in the future. Knowing that others are fighting the same battle and faced with the same questions at least brings with it some comfort.
Taking It Into My Own Hands
Personally, over the course of the last couple of years wavering back and forth on the pendulum of a not-quite-sure diagnosis, I have taken my health into my own hands, if for no other reason than to regain control or sanity.
While the exact term, whether lupus, Sjogren’s or something else, isn’t of great importance, the disease remains and I spend countless hours researching ways to feel better. Whether it’s through anti-inflammatories, a broad series of vitamins or even through dietary changes, some days are good and some days are not so good.
If you are like me and still have the doctors baffled about the exact term related to whatever autoimmune disease is attacking your body, take heart in knowing that each day they get closer to figuring it all out. I hope someday they find a cure, but for now, I’m really just hoping someone can tell me if it is lupus…or something else.