Margie Vonn, Truman Blue’s fictional mom in Truman Blue Mysteries, has Sjogrens (show-grins) Disease. Unfortunately, Sjogrens Disease is not fictional. Author Jane McAllen, the writer of this blog, has Sjogrens.
When you are out and about, you won’t notice people with Sjogrens Disease. It is an invisible autoimmune disability. You won’t generally notice people who have Sjogrens because we try too hard to appear “normal,” which is a conundrum. We desperately need your understanding, but we don’t want to ask for it, and we don’t want to appear we are in need. The truth is we want to be someone who doesn’t have Sjogrens Disease.
One time, that’s all I want to have to say it to someone. One time. “I have Sjogrens Disease.” Period…nothing else. I don’t want to say anything else.
And with that, I want that person to have complete understanding of why I do what I do, and how I do it. Irrational, I know. The usual reaction I get upon telling someone that I have Sjogrens, is seeing their face turn quizzical, and they say, “You have what?” I can’t blame them. I had never heard of Sjogrens before I got it. I would like to give it back!
Not everyone remembers that in 2011 Venus Williams dropped out of the US Open Tennis championship because she was ill. I do. She was subsequently diagnosed with Sjogrens.
If Sjogrens can knock down a giant like Venus, how does it affect a person? If you ask the 1-5 million people, who have it, you will get 1-5 million different answers. Autoimmune diseases are individually unique. Lucky us. And of course, Sjogrens is incurable. Medications can help a lot, or not at all. Symptoms vary in intensity and vary from day to day. We have flares, which means the symptoms intensify. Flares can last for half a day to months. The one thing we can all agree to is that stress to the body, mind, or soul, makes it worse.
The symptoms may or may not affect every system in the body. The first symptoms are almost always dry eyes and dry mouth. Fatigue, brain fog, and joint pain are common symptoms that fluctuate. For me, having a bad flare feels like a bad flu without the hurling.
Being such a variable disease, it comes with the burden of sometimes having to explain a weakness. I hate to have to tell someone I can’t do something because it will cause a flare. I don’t want to live as a victim. I abhor people who beg sympathy and those whose goal in life is to make others feel guilty for not providing for a supposed victim. On the other hand, people who I have interactions with need to understand why I ask for accommodations. It’s tough to balance.
My promise to my friends, family and co-workers is that I will push myself as hard as I can. But I have learned my limits and the signs of when I am pushing too hard. All I ask is that folks roll with me. The promise I need from them is, if rolling with me is causing an inconvenience to them, they let me know and we talk about it like people who care about each other. No blaming, no criticism. If we care about each other, then we can work it out. It is somewhat depressing that my body cannot always do what my mind wants to do, and the one salve that heals is the compassion and flexibility of another human…or a dog.
Truman Blue always rolls with my flow. He’s a good dog, and that’s what good dogs do. (And I need to add, that my friends, family and co-workers are wonderful, too.)