Just over a year ago, I wrote a post about the loneliness of WTF Disease. As best I could determine, no one else had it. A couple weeks ago, I think I may have found some others who do. Oh, I’d heard of them, read about them. But I’d never actually come face to face with them until last month. Maybe.
I have been told, and have chosen to believe (although I keep a tight grip on a smidge of skepticism), that my WTF Disease is actually chronic, long-term Lyme Disease. LD, if recognized and treated immediately subsequent to infection with the bacteria, is not usually a serious illness. If it goes undetected, untreated for months or (as in my case) years, it’s a whole ‘nother Oprah. It then becomes a complex, debilitating, treatment-resistant, potentially life-threatening mofo.
Over the past few months since my tentative (in my mind) diagnosis, I have googled support groups. Over and over, I read the limited information there — a contact name, a phone number, a meeting time and location. Over and over, trying to figure out when and whether I should give one a try.
Here, I have a confession to make. While I strongly believe in the theory behind support groups, I don’t have much confidence in their reality. Too many times, in my professional life, I’ve known clients who’ve gone to support groups, seeking — say it with me now — SUPPORT, only to find a group of people who could more accurately be called a “co-misery group.” Groups of people with the same diagnosis, condition, experience, what-have-you, who liked to tell their stories. Over and over. And sometimes liked to one-up each other with those stories. And the thing is, the way I knew that they weren’t really supportive, is that the people came to stay. They never left. The “belonging” attraction of the group became a way of life. The common ground on which the group was formed became an identity for the members. I am a ______.
Well, I hate the fact that I have WTF Disease. Or Lyme Disease. And while I continue to learn to accept and live with what I must, my main focus is to get well and leave this illness in the dust. I have no intention of becoming a lifetime member. So I went to the group meeting with a certain wariness. I drove around the church where the website said the group meets, a couple of times, trying to spot the “fellowship hall.” I didn’t see that, but I did see a group of 5 men in a hallway. I approached tentatively and one of them spoke first, “Lyme group?” Yea, I was in the right place. I’m glad he broke the ice and precluded the possibility of my asking, “Is this the WTF group?”
A few words come to mind in describing this group. The first is “welcoming.” They absolutely were that. And a few other words, “flexible, low-key, eclectic, helpful, intellectual.”
They were mostly male, and mostly my age, give or take a few years. But there was also the female college student, and her supportive boyfriend. There was the wife of the group’s founder, there with him. There was a mom who’s been very active in the group; her 20-year-old son contracted lyme when he was 11. On this particular night, her son, Dan, was there. I got the impression he doesn’t often make it. He was pale, thin, and appeared not to feel at all well.
At one point there was some discussion of settling on a name for a fund-raising offshoot of the group — treatment for chronic lyme disease is controversial and not normally covered by insurance, and the $$ add up crazy-fast. This was obviously something that had been discussed before, but donations were starting to come in, so they needed a name to file the proper paperwork. Several acronyms were floated, until Dan said, in a surprisingly assertive voice, “Please, no more. No more acronyms! Just give it a name, but stop trying to make an acronym!”
Mike, the group’s founder, gently responded to Dan, “You don’t like acronyms? OK, what name do you have in mind, Dan?”
And Dan says, politely as you please, “Oh, I’m just here to criticize. I don’t offer helpful suggestions.” Cracked me up. How refreshing! How many times have you been on some sort of “committee” where someone pretended to be helpful, but offered only criticism? And how often does such a person own up to it? Priceless! I like Dan.
So, there was some organizational stuff like that. There were introductions. I was asked to tell my story. I told the short version. The abridged version. And all around, when I mentioned painful bones, little motors buzzing in muscles, being too weak to drive, slurring my words, there was nodding. Finally, someone else. About 10 someone elses, there in one room.
They talked about doctors. I asked if anyone had heard of mine — truth be told, that was my main goal for the evening. And they had. I was told she’s competent. That she trained with the best in the area, and her treatment of me would most likely be the same way he’d treat me. I heard from someone whose daughter got well under her care. Worth the price of admission, right there.
They talked about antibiotics and supplements. Lots and lots of talk about that. Oral vs. IV. Someone said anything other than IV is a waste of time. I’m on oral. Someone else said that magnesium stearate is the very worst thing a lyme patient can ingest. That’s in a lot of my various supplements. They talked about alternative treatments, and their costs — hyperbaric oxygen therapy, some new LED (light) treatment. The people in that room had spent huge money, including college funds and retirement plans, trying to get well. Someone talked about some supplement combination that is best home-made, and at its very best, made into a suppository. Someone asked, “Do you have to make it or can you buy it?”
The guy to my right answered, “You can get it online, at ‘upyours.com.’” I was the only one who laughed out loud. I think some people wrote it down. When I go back, I think I know who I’m gonna sit beside.
There is more I’d like to tell you about the group, and about me, and about lyme disease. But dammit, one of the symptoms that is emerging strongly in recent weeks is what they call “brain fog.” My short-term memory is frighteningly diminished. As is my vocabulary, my ability to choose right words, spell them, put them together properly. This frustrates me tremendously. And keeps me from blogging much, for now. I have every expectation that this will pass.
I’ll come back and invite you to a cookie party soon.
(Um, I don’t know why “support hose.” Hose is just the next word that came to mind when I wanted to write about support. But, if you have been supporting “hos,” or “hoes,” or whatever, keep up the good work.)