Saturday, September 24, 2011

Can You Feel the Love?

As with any struggle that sets people apart, chronic Lyme disease offers support groups both online and in-person. While I have yet to take advantage of the latter, I've been immersing myself in the Lymie culture on Facebook. They've started such groups each with their own focus: venting, offering advice on alternative remedies, even "adult" gossip for those of us without much of a social life. And through these groups and one-on-one correspondence, my Lymie friends have become important parts of my life.

Nine months post-diagnosis, I am glad I know this brilliant, hilarious, empathetic, and tough crowd that won't back down, won't stop fighting for health and awareness. And after 29 years of being looked at funny when my nervous system or adrenals start to crash, it's reassuring to know I can turn to them.

We're like an extended family that protects and supports its members, regularly offering virtual hugs and dingbat hearts. We've set up fundraisers and auctions for each other, we've mailed samples of supplements to each other, referred each other to our doctors, and celebrate birthdays with gusto.

But as many Lymies have expressed, it's not all peachy in the online Lyme world. Due to the numbers of us on Facebook--heightened by the fact that our disease amplifies our emotions (and not the best of them)--well, perhaps it comes as no surprise that gossip and cattiness swirl through this community.

There are cliques, hookups, heartbreak, and fallouts. A few times, I have witnessed disagreements on the best diets and medications leading to un-friending and blocking. There are debilitated Lymies who are jealous of the more functional Lymies, and know-it-all Lymies who don't support alternative treatments. And the more straight-walking, clean-living Lymies look disdainfully upon Lymies who still consume soda, alcohol, or coffee. Some Lymies will get better, while others won't, and some of the former will feel guilty for their improvements. And then there are the creepy dudes whose private messages contain words that would be equated to molestation in the non-virtual world.

Yes, it's a complicated, emotional, unstable online world for Lymies.

But don't these rules apply to any subculture? Isn't there always a bully, a cheerleader, a drama queen, a depressed introvert, an oblivious trainwreck, and a jealous unpopular girl? Wouldn't it be weird if the Lymie community was one big smooth ride?

Moreover, we're not healthy, and even healthy people have the above problems. In other words, the obstacles we face are more than enough cause for dysfunction.

I, for one, am elated that I've found the people I've befriended this year. Without this network, I'd have one less best friend, several fewer good friends, and would read far fewer articles about the likes of Klinghardt and things like rifing, vaccinations, and biofilms. I'll take the bad with the good because the good has been an overwhelming show of sisterly and brotherly love. Even though my pictures that belie a life of dress-up and cityscaping have raised a few eyebrows--and I've felt some of the heat--I honestly feel like, for the first time in my life, I've found a place where I belong. I'm no longer standing on the outside looking in.


  1. I feel the same way! It really is something--that the lyme community I've met because of this illness also happen to be kindred spirits with the most amazing hearts and minds. People I really enjoy knowing! If only we were all 100% at the same time things would be nearly perfect. :) I tend to steer clear of the very opinionated and closed minded lyme people--my way or the highway types--as that says to me that they do not know much about lyme and it's vast complications which each individual. Have a nice weekend lady!

  2. I just love reading your blog. You always say it so well! This is a long and rough road for all of us but my path has been exponentially easier to walk with you by my side. Thanks for another great blog post -Thane xx