Now I "Get It"

Another conversation came up on the listserve for those with Sjogren's Syndrome. Someone was saying they are tired of people not understanding, and how hard it is to have an invisble illness, not feeling like we look. It really is a grieving process to lose such a quality life and getting hit in the prime of life. But I wanted to offer hope. So this is what I wrote back:

I know it is easy for all of us to say, I look fine, and I feel awful, and no one understands. And this is all a part of grieving for the loss of life we used to have.

But I want to encourage you all to be able to find a way past that stage. Don't allow yourself to get stuck there for too long, or too often.

Let me tell you about me:

The first year of my illness, I gave in to it. I moped around, felt terrible, and just surrendered to the fact that I was going to feel miserable the rest of my life. "No one understands, so I might as well go outside and eat worms! "(Not really, but you know...)

I declined invitations everywhere except church, and lived (if you can call it that) hanging out on the bed or couch watching television or reading books.

But then a lightbulb went on and I realized I could feel miserable at home by myself living a life I despised, or I could allow myself to be reinvented into a new stage of my life. Yes, the old life is gone. I wasn't able to workout two hours a day or weight lift over 300 pounds ready for lifting competitions. I couldn't work hour upon hour at work. I couldn't stand or sit for long periods of time, and I had to be near a restroom. But I didn't have to give in to the pain, the fatigue and the suffering. The more I determined to get back into the game of life, the more I realized I could live at home suffering, or enjoy my life suffering. The suffering somehow didn't seem quite so intense when I started enjoying life. I developed a sense of humor about things (granted-sometimes a sick sense of humor!).

I had a new life. Different. And I knew this new life could teach me many things and equip me in ways to prepare me for what was ahead.

I also found out that knowledge is power. I researched my illness and knew what questions to ask at the doctors. The more I studied, the more I could also help others with their illnesses. Sort of a patient liaison. I couldn't have done that if I hadn't lived it. I have a close friend right now battling serious cancer issues, and I think because I've walked the road of suffering she is free to be herself around me. No fake face trying to entertain me and tell me it's all going to be okay.

Also-one more thing to keep in mind. We might feel invisible. Wonder why no one understands what we deal with, or bemoan that we don't look sick. (I'm GLAD I don't look how I feel! I don't want pity, and when I feel like I look good, it gives me a little more bounce in my step). We need to realize how many times we have talked to or walked by a perfectly "normal" human being who is suffering from something. We don't understand-we don't even acknowledge their condition. So we can't blame others who miss the fact that we are chronically ill. We do the same thing to others every day.

The difference is, I hope, that when they tell us they are sick, we DO understand, and we can be there for them. Not telling them how much worse WE have it, but just listening to them and letting them lean on us. Why? Because we GET it, and we care. Really care.

Did we care quite so much before we got sick? Maybe not.

So, this thing we call Sjogren's Syndrome really CAN be a good thing.

Just a thought.