Diagnosis Half Received/CFIDS reflection

This rheumatologist has done the unthinkable. I have a name to my illness. Today I received a diagnosis of Sjogren's Syndrome, which my doctor thinks is only half of the picture. She believes it is secondary and not primary, and therefore I have an unspecified autoimmune disease that has caused the Sjogren's to progress. Never-the-less, in a weird, morbid way, this is really, really good news.

As many of you know, when you have a chronic illness that is not named, people begin to question your sanity, doctors blow you off and it leaves you questioning your own sanity. I've spent countless hours wondering if I really am just a giant nut job who is somehow thinking myself into swollen joints and fevers in order to produce secondary gains. A certain part of everyone at the threshold of adulthood wants to hide from the real world, but I often wondered if that subconscious fear was so powerful that it had lead me to react like this. I've wondered if I could think myself out of it. I've wondered if I could start to do yoga everyday, I would feel better. I've wondered if I started getting up at 7:30AM everyday and began some sort of regimen, would I feel better? Was I just really lazy and trying to make excuses?

The answer, as my blood work doesn't lie, is no. And it is a shame that people with chronic illnesses have to go through many years of that before receiving a diagnosis. If you have an extreme amount of issues and pressure, I can see things like this becoming psychosomatic, but I don't think for one second that anyone would subconsciously decide to give up most of their life. Many people see us "sitting this one out" when the task is arduous or boring, but all of us know (and those close to us) that we have to take a breather from many fun activities as well.

I am only too eager to shed the diagnosis of Chronic Fatigue Syndrome that has been carried around with me for the past few years. I believe this disease exists, no doubt in my mind. It is just something that is poorly understood, so poorly in fact, that people with this label get treated as though they're an idiot by not only others but the medical community as well. Doctors will tell you to go on a special diet, take anti-depressants, buck up, take their "special" supplements they have created, etc. Others will say that they are tired "too". Back when I believed this is what I had, I had a roommate who's doctor father said CFIDS is just an "excuse for people to be lazy."

As I am glad to leave this misunderstood diagnosis behind, it does make me angry at the medical community at large as well as society's perceptions of it. Why is arthritis genuine when fibromyalgia is not? Why is lupus legitimate, but CFIDS is scoffed at? It is disgusting and unfair for people to treat other humans this way...and I wonder if it is this way because there are drugs for everything else, but no drugs for CFIDS and therefore no money to be made off of their illness?

Aside from my CFIDS rant, I have been put on a small dose of Plaquenil that I will start tomorrow. As many of you who read this know, it is an anti-malarial drug that has been proven to benefit patients with connective tissue diseases. If my arthritis persists, I will also begin Prednisone, which makes me laugh as my dog used to take it.

I know the Paquenil will take a while to work, but I have one thing I didn't have: hope. Now that I know what this is and I see the benefits of these medications, I now see my life as full of options. Yes, I will struggle with symptoms forever, but it will not affect me the way it once did. I can now look forward to the rest of my life. I know this disease will be a part of it, but at least I know what to call it.