Monday, April 2, 2012

Social Studies

I've always been sickly.
So when I first got my chronic Lyme diagnosis in January 2011, I sent out a mass email to inform my friends that there was a reason for all my years of suffering from inane chronic illness. I essentially let everybody who mattered in my life know that I'd just found out I had late-stage Lyme disease and Hashimoto's thyroid disease. (I had yet to learn about the parasites or co-infections.) 

Sending that email felt like I was exhaling after decades of holding my breath. I could finally justify the embarrassing maladies to which they had all born witness — a constantly runny nose, stomach aches, my unathleticism, bad PMS, panic attacks, sweatiness and fevers, and eccentricities that often made me less "different in a cool way" than "different in an uncool way".  

After I sent the email, many of the people who truly mattered in my life wrote back to show support, and a few relatively new friends whom I hadn't yet had the opportunity to fully appreciate even stepped up to the plate to offer their help and care, and for them I am eternally grateful.

On the flip side, surprisingly, a few long-time girls whom I had considered very dear friends not only never responded, but have quietly disappeared from my life since then.
Others have questioned the legitimacy of my illness or disapproved of my treatment choices. Those who were quick to judge and criticize without trying to understand my choices are no longer a part of my life. One friend even stopped talking to me because her doctor repudiates my claims that Lyme disease exists in a chronic state (which is a fact that doctors astonishingly ignore much in the way they alleged HIV was psychosomatic until the 1980s).

There have been times I've wondered, if I had found out I had something more well-known, something the mainstream not only acknowledges but that also garners instant sympathy and compassion, like a brain tumor, breast cancer, or MS, would the non-reactive, non-supportive friends have reacted differently? 

I'm not dismissing or denigrating the plights of those with the aforementioned diseases, but I wonder, did the "disappearing" friends go quiet because they've never heard of late-stage, chronic Lyme disease? If they think of Lyme disease as not much of a big deal, sort of along the lines of chicken pox (which is about as detrimental as mainstream medicine paints Lyme disease to be), then could that explain their ambivalence? 

And if that's the case, have I done a poor job of explaining, informing, educating them over the course of the last year on the severity of Lyme disease and its co-infections? I've handed out copies of Under Our Skin, shared my blog on Facebook, shared articles, and conversed on the topic with many people, so if anyone's been paying any attention, they should know by now that Lyme disease is far more serious than mainstream medicine makes it out to be, and that I'm very sick.

Lamentably, life doesn't work that way. The people who won't listen, well, won't listen, and the people who do, do. See, my blog readers consist of far more already-in-the-know than people who unwittingly deny or ignore the topic — those who, thus, probably should be reading it.

Here's the thing. It's not about me, folks. It's about all of us. It's about your health, your loved ones, and a general sense of awareness.You or someone you know will undoubtedly be bitten in your lifetime; the prevalence of Lyme disease is skyrocketing like never before, and doctors still ignore it. This is a major problem. Hundreds of thousands of people are mistakenly being "treated" for "fibromyalgia", lupus, MS, ALS, migraines, arthritis and other conditions that were actually caused by the borrelia spirochete. 

(Note: Not every person with lupus, MS, or ALS has Lyme, but a large percentage of them may think they have lupus, MS, or ALS when they actually have Lyme. Doctors are notorious for this misdiagnosis.)

If you think I'm making this up, or that it feels good for me to exaggerate in an effort to get my point across, I'm sorry to say you're wrong. This can't be wished away, and it certainly shouldn't be ignored anymore.

I'm writing this with two kinds of people in mind: (A) The ones who claimed to be life-long friends, and for whatever reason, stopped talking to me once news of my illness broke, and (B) The ones who refuse to accept that Lyme disease is incredibly serious and multi-systemically damaging. The latter group believes that Lyme disease is treatable with a simple course of antibiotics — and many of them still believe I overdramatize my symptoms.  

I do recognize that humans are busier and more distracted than ever by an overabundance of informational stimuli, so I'm not faulting every person for — God forbid — not reading my blog. Who am I to say that what I share bears more value over the causes to which people choose to ascribe their attention? By no means do I expect every person on my Facebook page to stop and listen to what I have to say. But it would certainly be nice if the two types of people mentioned above would.

Ultimately, it's not about me or my need for sympathy or attention. I live a quiet life out of the limelight (no pun intended!) and too much attention even makes me uncomfortable.

All of these lessons and in-my-face doses of reality have had some unexpectedly positive side effects, too; going through all of this has helped me to not take others' behaviors so personally, learn to let go, and even caused an epiphany of sorts regarding who I am.

The combination of clearing my brain of toxins, reaching the maturity that comes with hitting thirty, and doing things my way for a change has led to an unprecedented sense of peace and comfort with my life. After a lifetime of trying to please others and doing the things I thought I was supposed to do, I've finally embraced the fact that I am an unapologetically unique individual.

So, my somewhat embarrassing confession is: I'm inherently anti-social. My favorite activities are one-woman endeavors including gardening, writing music, illustrating, researching disease, going for walks, taking road trips, playing with animals, watching movies, reading books and, of course, blogging. I'm an anti-social and solitary creature. I'm not going to pretend otherwise.

Yet, for nine out of the last ten years, I've been a scenester, living a social life, working in social fields, trying to be everyone's friend, and painstakingly seeking everyone's approval. That kind of lifestyle only guarantees friendships of higher quantity than quality.

I'm now realizing that social settings have always been uncomfortable for me, but I thrust myself into them because I never even considered the alternative. And almost every single time, the stimuli — noise, physical exertion of excess walking or standing, small talk, parking in San Francisco, and loud music — put me over the edge. My brain gets fatigued, my body falls apart and my symptoms start to flare.

At the end of the day, I must avoid as much stress and trauma as possible.

And so I've made a choice. I've made the choice to focus on myself and spend my good days doing the things I enjoy. As a result, something remarkable has happened: I'm comfortable being me. I'm enjoying my good days. I'm happy.

I'm happy. Wow.

And yet, there's a tradeoff. In return for my therapeutic reclusiveness, I hardly see my local friends anymore — the ones I have left, anyway. Friends still stop by from time to time, and I do still get the occasional text message checking in on my condition, but they've all become less and less frequent with time.
It's not that I fault anyone for this, because (while I'm communicative on Facebook and the phone), I'm deliberately reducing what most people deem as desired, natural human interaction. Fallout is to be expected.
I'm not saying friendship is unimportant, or that my solitary lifestyle should be void of human relationships. Thanks to the Internet, I keep in frequent touch with my two best friends — one of whom lives 2,000 miles away and the other of whom lives 8,000 miles away (so I couldn't hang out with them even if I wanted to) — and I've also been lucky enough to meet a host of interesting, intelligent, endearing people online who fight this battle too.
But at the end of the day, I turn off the computer. I turn off my phone. And I go to bed with my cats. Happy.
I still feel unwell more often than not, and I still have a long way to go. But I'm so much wiser because of everything I've gone through. And I know who my friends are. And even though we don't see each other very often, they're always in my heart (as cheesy as that may sound), and I know they're not going anywhere.


  1. Leila,

    I returned to Austin to visit friends this weekend. I saw about 15 of them who I haven't seen since my return from Vermont in October; and some I haven't seen since I was diagnosed with Lyme in 2009 for that matter.

    When asked, "How have you been doing?", I thought their inquiries were genuine.

    My honest response of "Well... I could be better, I could be worse..." was met unanimously with a look of "Oh shit! I just asked a rhetorical question, and now he's going to let me know. Now I have to sit here and listen to this guy's problems."
    Heads turned once I began to reply, and a few people laughed at how much I complain. I told them not to ask in the future.

    From now on, I know my answer to "How have you been doing?"... will be - "Do you really want to know, or do you just want the standard I'M FINE???"

    Leila - we're from Texas. Very few people know or give a shit. I caught Lyme in Highland Park Dallas when I was 10. Got reinfected while living in Vermont. Not a one of them wanted to hear about it.

    Forgive them of their arrogance, and be thankful for the ones who care enough (or pretend to care enough) to ask.

    Much love.

    Andrew Nelson

  2. Some of us are just as much a part of your life as you let us be, even if we want more...

  3. Thanks well this is been interesting hearing your saga and I really appreciate all the information provided. Next time you visit Austin give me a call. And keep up the updates, even if I don't respond, I'm reading about you.

    Be well

  4. I feel like you were talking about me! Thank you for always writing from your heart. You always have such a great way of describing the Hell that is Lyme, co's, etc. I can always relate. Thank you again. Hang in there!

  5. Great post Leila! I think all of us with Lyme can totally relate to losing friends, but gaining new ones. <3 Part of the journey that will always link us together I believe. Who would of thought life could turn out this way huh?