The Hard, Cold, Reality

Wednesday, I attended another of our local Sjogren's Syndrome Foundation support group meetings and as I mentioned yesterday, enjoyed it very much. But later, after I had settled myself in bed for a nap, I had this niggling feeling of uneasiness. I thought about the conversations during the meeting and my contributions, and I couldn't shake the feeling the I had put my foot in my mouth (yet again) but couldn't quite put my finger on exactly what I said or did.....

Hm. Let's see. I thought. What did I do this time that will make me cringe when I remember it?

I went through the list of my usual faux pas:

Did I show up on time and in the right location for the meeting? Check.

Was I wearing shoes that matched and did I have all buttons and zippers buttoned and zipped? Check.

Did I goober on any article of clothing at any time during the meeting? Nope. Well.....just one little coffee dribble but it was on my pants so that doesn't count.

Did I say something stupid? Ah, geez. Bingo. Bummer. Yeah. I did. And suddenly, I remembered exactly the words that I wish I hadn't said. It happened like this:

The meeting was about to end and I jumped into the dwindling conversation. So, can I just say something here? (Which was kind of a goofy thing to say considering I had been blabbing for the whole time). Several of the group members had shared their firm belief that excluding certain foods in their diet had reduced some of their symptoms, and I felt the need to comment on my experience with this type of diet. Y'all probably remember my endless blogging during a lengthy experiment with a very restrictive autoimmune protocol diet which ended with me feeling worse than when I started - constant diarrhea, increased fatigue, and crankiness that exceeded all previous levels.

I began by sharing that I had followed very carefully an elimination type diet, which didn't end well. Then recounted the conversation about said diet with Dr. Young Guy during which he gave me the go-ahead to try it with one caveat:

"Julia," he said. "It's fine as long as you get good nutrition, but I also want you to know that these diets don't work for everyone. If you try it, and don't get good results, I want you to remember that it's not a reason for you to feel as though you're at fault, or that you're a failure."

Everyone had been listening, and several of nodded their heads in agreement. I could see that others had the same experience as I had, and I felt as though I had expressed this in an accurate and non-judgmental way. But then I felt that I had to add just one more thing.

Just one more thing.

Yeah.

There it was. Geez. The bluntly delivered words that caused everyone listening to squirm in their seats:

So, remember that this disease HAS NO CURE. Yet. And there's no diet, or supplement, or anything else at this point that has been proven to CURE autoimmune disease.

Silence. Several people looked down at the table. Most broke eye contact with me.  I could feel an immediate change in the atmosphere of the group, and it wasn't a change for the better.

Drat. I thought. Why? Why did I have to remind everyone of what they all knew? Why did I have to point out the obvious and very negative aspect of this disease?

The moderator quickly broke the awkward silence by moving on with the meeting's upcoming schedule and agenda after which we returned tables and chairs to their original position, said our good-bys, and everyone headed home. I suppose that the focus required to get myself home and fed and into bed pushed my dumb stupid comment into the back of my mind. But it forced itself back into my consciousness as I rested and my energy began to return which is why I didn't realize the cause of my uneasiness until I settled in for a nap.

I replayed it all over and over in my mind, carefully examining my feelings as I reviewed my comments. After I gave it some thought, with surprise I realized that perhaps this wasn't as catastrophic a comment as I had initially believed: Yes - I am regretful that I dropped the "incurable" bomb in a way that dampened the mood of the group. Yes - I wish that I could have couched these facts in more tactful words, or waited until a better time or a different meeting to share this.

But.

Still, I have this sense that it simply had to be said. I hadn't heard anything even remotely similar to my comments in all previous meeting that I had attended: That there IS no cure for Sjogren's syndrome at this point. Some physicians and researchers feel that it is a slowly progressive disease, meaning that the assault on our body's normal tissue by autoimmune cells is an ongoing process.

There it is, I guess. The hard cold reality of our disease which is so challenging for me and everyone else dealing with autoimmune issues to accept. To come to some kind of acceptance with. To process, to assimilate, and then to move on with our new lives. I can't speak for anyone else, but I know that on occasion I need that reminder. I need to revisit that most difficult process of dealing with the facts of autoimmune activity.

I need to realistically build my expectations for my life on this hard, cold reality.

Because sometimes I forget. Sometimes I let myself believe the hype surrounding so many promises that if I eat these particular foods, or if I don't eat these particular foods, or if I take this vitamin, or if I slather on this cream, or if I do one of a million things............that I'll be free of autoimmune disease.  I buy the book, or the product, start the diet, take the vitamins, and eagerly wait for the promised results. So far, nothing has done it. Nothing, including many medications prescribed for me by my physicians, has cured and healed my body completely.

Have there been things that have reduced my symptoms? Yes. Absolutely. Realistic exercise, mindful meditation/prayer, a healthy diet that includes lots of vegetables and fruits, avoiding UV rays, pacing my day to preserve my energy, trying to hydrate my eyes mouth and skin, compliance with and constant evaluation of my medication regime, being open to alternative treatments from traditional medicine and being completely honest with my prescribing physicians about those treatments, are all important measures that usually help me to manage my symptoms.

But.

None of those things have cured me.

This is unpleasant to consider, yet still it is necessary for me to be aware of this fact as I continue to live with this most difficult disease; or I will repeatedly set myself up for disappointment and feelings of failure when various methodologies that promise cures don't prove to be what they claim. I need to remember the biological facts of Sjogren's and with that acceptance, I can set aside wishful thinking to find authentic joy and happiness in focusing on the abilities that I really do have.

Sometimes the hard, cold, reality is what I really need the most to find a warm, meaningful and positive life.