So Long, Farewell, Auf Weidersehen, Good-bye… to My Support Group

Okay, this is a rant. This rant is so long and complicated, with so many connections to other topics, that I have considered that I should perhaps launch another blog just to deal with it. Or maybe create an online course for people with complex autoimmune diseases. Something. Because I finally have snapped for sure.

It happened while I was attending my monthly Scleroderma Support group in July. I go to these meetings because I need to talk to people about my illness, become educated about treatments and coping strategies, and to get, you know, support! I want to flock with my peeps!! Usually in these meetings there are introductions, a little sharing, nice snacks, and a presentation by a guest speaker.

This is the problem. The speakers who have been coming are often involved in alternative treatment strategies. As in alternative medicine. As in flat out pseudoscience masquerading as legitimate methods of treatment for our complex health conditions.  These speakers have been trained in their “method” and faithfully parrot back what they were told in their training. They have little actual knowledge of human physiology, biology, disease, or science. They are connected to a product or system that they want to sell to us to help us “stay healthy”. They especially tell us that they can help us have “healthy” immune systems and/or take away our pain. Since I am in pain because my immune system is misbehaving it’s hard to not find their messages appealing.

Except… I was a biology teacher. I used to work in a research lab. I know science as a logical process with rules, and this information is so outrageous it causes me to wiggle around in my chair, bite my tongue, and often whip out my cell phone to fact check.

Me: Google, please tell me if Leaky Gut is a real thing?

Google: Are you crazy? Of course not.

Me: That’s what I thought…

But evidently I absolutely, positively need to take this essential oil to protect me from leaky gut. Or the toxins will leak out though the holes in my intestines. This is the cause of many complex illnesses. Research? We don’t need no stinking research. We have testimonials!!

Compression Points on Foot
This pressure point chart was so outrageous I needed to put down the knitting to take a picture!

How about the day I learned that I need to massage my hands and feet at specific pressure points to clean the toxins out of my liver, pancreas and other parts of my body? Really. I was informed that the problem is that the cells of my body get dehydrated, will form tough protective barriers, and the fascia then can’t move fluids throughout the body. This was such a garbled version of reality it was practically science salad.

Me: Google, please tell me exactly what fascia is.

Google: Sure. Fascia is the thin, tough barrier around muscles and organs. It is part of your connective system and made of collagen.

Me: Google, just to be sure, it doesn’t have anything to do with fluid transport?

Google. No, dumb ass. That would be the lymph system.

Me: Google, that’s what I thought. No need to cop an attitude with me, you wouldn’t believe what I’m dealing with here.

As if all this fact checking wasn’t exhausting enough, there is also a hint of “anti-science” in the room. Several other patients have become convinced that we need to stop taking our meds as they have unacceptable side effects. It is better, they argue, to control our disease with diet, essential oils and supplements. OMG! It isn’t possible to google fast enough to keep up with this stuff!

Me: Google, what is this alkaline diet all about?

Me: Google, is dairy inflammatory?

Me: Google, do I need to take massive doses of probiotics every day, or can I just eat yogurt? This speaker is telling me I have to buy their product since I can’t eat dairy anymore…

Me: Google, how quickly do bacteria divide? Every 20 minutes? So I don’t need a massive dose?

Me: Google, is there any research showing a positive benefit of essential oils in systemic sclerosis?

Google: Stop! I have smoke coming out of my ears! Let me direct you to this nice List of Topics Characterized as Pseudoscience. There. You’re welcome.

Lunch
Yep. This is my lunch. See the dairy? That yogurt has 8 live cultures in it and I am not giving it up!!

While loading up on gluten free snacks at the break I finally snapped and asked the group facilitator if she thought it would be appropriate to let people advocate going off their meds and using essential oils to treat their conditions if this was a cancer support group?

“Well, no…”, she replied. “But that’s cancer.”

I just looked back at her until I saw something click in her brain, and then I left. I’m done.

Since then I have been fussing around about why this is happening. I understand that this is a tough disease (in more than one way), but how awful it is that there is so much misinformation out there that people don’t know what is accurate, and what isn’t. Desperate people will clutch at anything that gives them hope. Sometimes these things are based in sound logic, reason and science (stem cell transplants), and sometimes they are not (amber beads for pain relief). Obviously people need to know more about the nature of science, basic physiology, immunology, cell biology, and how the medications prescribed by their doctors work. They need to know their Star Trek!!

Star Trek Meme
A no-win scenario, the Kobayashi Maru test was designed to be a test of character. 

That’s right. Star Trek II: The Wrath of Kahn is what I needed to put this into perspective.  So many movie quotes, so many posts.

So, I feel a lot better after finishing up my rant, but I still think that I may need to launch a mini-series of posts relating to this. I mean, there are all those pseudoscience cures to debunk. All that biology to share. All those Star Trek quotes.

Stay tuned. If I start the new blog, I’ll let you all know where it is. Otherwise, a lot of my knitting friends are going to be exposed to some biology.  Feel free to let me know how you feel about that.J

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