Onto this entry now.
In high school, my best friend was a free-spirited, beautiful, rebellious, talented artist named Maisie (I've changed her name to protect her identity).
Maisie and I would sneak off our elite, prep-school campus to smoke cigarettes and explore new places together. We were both creative romantics who lusted after handsome boys, chased random kittens, and sang in unison to the Fiona Apple songs that blared from my Toyota's speakers. We gave each other makeovers using glittery powders, styled each other's hair, and shared our sullen poetry with each other.
She was my platonic soul mate.
But our friendship was rife with drama from the start. In spite of our similarities, we had some rather blatant differences. For one, she was always drawn to the wrong men — drug-addicted, abusive, high-school dropouts, one after the other — as early as our teen years. And while I was able to succeed academically, she regularly struggled to arrive to school on time or turn in her homework, causing her to fall behind and not graduate with the rest of us in June 1999.
I had a hard time with her explosive, desk-kicking tantrums in classrooms; she had a hard time with my lack of complete, unconditional and accepting love and support of her.
After a series of fights, we finally stopped speaking when she failed to show up at my dorm for a planned weekend visit — standing me up after I had already blown up the air mattress I specifically purchased in preparation for her arrival.
I later heard that, ever since she had ballooned in size our senior year, she had been telling our mutual friends she despised how easy it was for me to stay skinny and couldn't wait until I got fat someday. Then it dawned on me: I suddenly realized she was — and had always been — deeply jealous of me.
It would be almost ten years before we would speak again. One day in 2008, out of the blue, she contacted me on Myspace. I was excited to renew our friendship and easily forgave the past, happily chatting about her new baby and eccentric life adventures. Hearing from her after all these years had brought me to tears. Happy tears.
But then I realized the true reason for her contacting me: she needed money and had exhausted all other options. I didn't have any money to give her — and incidentally, she still owed me $75 from high school (but I didn't see any need to remind her of that) — so her interest in renewing our friendship waned.
Fast forward about four years later — to about a month ago. After recently adding many old high school friends on Facebook (including Maisie), on this particular late summer day I was feeling distraught over several facets of my bleak condition — including the way the medical community treats my disease, my poor prognosis and recovery, and the fact that very few old friends have said anything compassionate to me regarding my condition even though they're almost all aware of it by now.
Yes, I go through periodic bouts of feeling sorry for myself — usually cyclically aligned with my menstrual cycle. Whether that's acceptable or not, the emotions are very real, and I occasionally express them on Facebook, in between my more common posts about kittens and the arts.
So, on that particular day, feeling pensive and unappeased in general, I posted the following lengthy status on my Facebook page (the lack of capitalization/syntax is just a personal stylistic quirk I apply to social media)—
"i wonder - if i had cancer/diabetes/AIDS, would people still invalidate my symptoms as stress or laziness? probably not. should we blame the common man for a lack of interest in this disease, or should we blame the medical establishment for misleading the public that all lyme disease is 'acute' - treatable with 2 weeks of antibiotics - not acknowledging its chronic state despite a plethora of scientific evidence that it exists? by no means do i let my disease define me, as noted by my scarce statuses about it: i prefer to focus on beautiful, exciting facets of my life. & when i have issues with lyme that i want to talk about, i go to the lyme boards, or i blog about it. never wanted my profile to be overrun with lyme talk. but maybe i should talk more about it on my profile because people need to start paying attention to this disease. it's a MAJOR problem in this country and largely ignored by doctors who prefer to invent diseases like 'fibromyalgia' (usually lyme). laymen need to be the ones to stand up and demand that it gets acknowledged, but for this movement to succeed, non-lymies also have to care enough. we don't have any national organizations behind us organizing 'walks' or fundraisers like other common diseases do. i blog about my experience with lyme to try to educate non-lymies about it, to help others with the disease know they are not alone, and to keep my old friends informed on my status. about 95% of its readers are lymies, as i've found very few of my old friends are interested in learning about lyme or keeping up with my daily struggles. that's fine. it has taken on a new purpose and i love that i am able to help lymies through blogging! but if i want to get the attention of non-lymies, posting on facebook about lyme might actually be more educational, albeit more annoying and ultimately prompting more unfriendings. i guess i will take that risk. my actions will always try to serve the greater good of humanity, whether seen as popular or not."
Yes, I'll admit that was kind of a rant and a call for attention both to myself and to Lyme disease.
I badly needed support that day, and luckily that status got some warm comments from like-minded warriors who knew all too well what I meant, as well as some non-Lymies who thanked me for having educated them on a disease about which they had previously known nothing. I guess that's one thing Facebook is excellent for — we all teach each other about new things all the time.
What I did not expect was Maisie's own status on her Facebook page — posted almost immediately after my own:
"You know what pisses me off? Passive aggressive, self-pitying people who are in denial about their own level of self-involvement. We all have problems. For instance, I am a single mother, living with my parents again, returning to finish my college education on a grant; I have no child support and I have an order of protection for my daughter against her father. And that doesn't even scratch the surface of medical or emotional issues. So what do I have to say? We all have problems. Get over it. As the Buddhists say: life is suffering. And as I say: it's what you do with the pain that counts."
I was saddened by her knee-jerk emotional reaction — her perception — of my status, rather than her taking the opportunity to read the words I actually wrote.
To take the opportunity to listen. To want to understand the enigma of a disease her old friend was experiencing. To want to learn about Lyme, about what I'm going through. To understand the medical politics, the controversy behind it. To educate herself for the sake of expanded knowledge. For the sake of learning something. Or for the sake of reconnecting with me.
If she had made an effort to get to know me beyond my status, she would have learned I'm hardly sitting around being miserable about my condition, and that I live my life to the fullest that I can.
Anyway, I do understand some people's lack of interest in listening or learning. The disinterest is rather common; but the troll-like passive aggressiveness launched at me was unfamiliar territory, and quite frankly, shocking. It left me with no choice but to delete her from my friends list. Not to mention how ironic I found it that she herself was criticizing passive aggressive people when that's exactly what she was doing in her status. Hmm.
And by the way, she is correct — we do all have problems. But invalidating another person's problems due to the perceived severity of one's own problems isn't fair. Why aren't Americans entitled to complain simply because there are children starving and living in slums in India? Every opinion and feeling is a valid one independent of the rest. We need not compare everything to something else.
It really is sad that she had to make a competition out of our foibles. I would have been there to offer an ear if she had wanted to tell me about her struggles. I know she struggles with her own challenges surrounding raising a child on her own. My health is completely shot, with nearly all my organs malfunctioning, and yet I don't think I deserve any award for being a bigger victim.
The problem is, often people who've made a mess of their life want to be the bigger victim than their fellow perceived victims. They've quasi-programmed themselves into this mentality. They will always be the biggest victims of all.
And they absolutely despise when they're forced to acknowledge that their perceived competitors have a serious, legitimate disease on which to blame life's flops and missteps, when they themselves made messes of their lives without any good reason.
That may be snarky of me to say, but it's the truth — look at the people who criticize us most for our health struggles... aren't they almost always the ones who are miserable and underachieving? Their missteps are in competition with ours. Hence her knee-jerk reaction and outpouring of complaints in her status.
Yesterday it became clear just how much she despises me, when I was forced to actually "block" her — which I should have done when I unfriended her, but it hadn't occurred to me.
On this more recent incident, she had publicly announced on a mutual high school friend's page: "Ignore Leila. She is always cranky and self-absorbed" after she didn't agree with a comment I had made on said friend's page — which, by the way, had absolutely nothing to do with Maisie and only served her own desperate need to attack me in any way possible. I will never understand what fuels internet trolls or why any adult would behave in such a way. And I don't engage in childish attacks, so I just blocked her.
The truth is, I'm slightly concerned that, if she is as pathologically obsessed with tracking me down for the sole purpose of launching attacks as I think she might be, then I wouldn't be surprised if she somehow unearths this blog. Although I think it's highly unlikely she knows about it or reads it.
Letting her back into my life after all these years was a naive mistake on my part. I'll be more careful and discretionary in the future. We might idealize the notion that humans evolve into better people over their lives, but sadly, many stay the same or their worst qualities get worse. I wish it weren't so.
But enough about Maisie.
What is it about chronically ill people being labeled narcissists because our illnesses force us to focus inward? A few select individuals have labeled me as either a narcissist or self-absorbed. Is it because I blog? I majored in journalism in college and greatly enjoy writing — so of course I'm going to chronicle my experience, and nobody is forced to read it. Writing is pleasurable and therapeutic, and frankly, one of very few things I consider myself good at. Does that make me narcissistic?
As for the chronically ill in broader terms, you see, in order to get well, we have no choice but to be careful about our dietary choices, extracurricular activities, medications, and pretty much everything else we do... and we're often unable to be social when we're sick. This focus inward gets mistaken for self-centeredness.
There is a huge difference between being self-centered and being so sick that we have to follow a high-maintenance regimen. That's just the nature of the beast.
So, what about when we take our plight public on Facebook and Twitter? Do our educational weblinks about health, or our progress reports, or our emotional pleas when we're rushed to ER in the middle of the night make us narcissists? Let's compare ourselves to our fellow average users on Facebook and Twitter. Going off that logic, who isn't a narcissist these days?
Our modern day culture trains us to be narcissists by the very nature of social media. We all post photos of ourselves, our pets or our babies. We share what music we're listening to, what we ate for dinner, or when we've arrived at the gym for a workout. My friends who are business owners all promote their businesses on Facebook and/or Twitter; no exceptions. We're all basically crying out for attention in a virtual mob desperate for some recognition.
People with Lyme disease are also often accused of being "obsessed with Lyme disease" (I know I have been.) That's just baloney. Only because there is so much misinformation circling the websphere about Lyme are we forced to research this incredibly complex disease on our own. And so what if we're "obsessed" with our disease? People are obsessed with makeup, fashion, their exes, sports, and many things around which their lives revolve.
One thing I can say with certainty about our "obsession with our sickness" is that this "obsession" fuels our drive to get better for every single one of us, because it keeps us trying new protocols we read about — in our desperate attempt to get betters. A lack of "obsession" breeds apathy, and once we reach the apathetic point, we've given up on even trying anymore.
I'd rather be obsessed and get well than ambivalent and stay sick.
As for constant negativity, believe me: Lymies are careful about how often we whine online. We hesitate every time we do it. We're painstakingly aware that we run the risk of being labeled "negative" if we so much as utter a word about a day of seizures or locked joints.
But considering what my friends with Lyme disease endure — from paralysis to migraines to food allergies to chronic fatigue to joint pain to seizures to tumors — all caused by the same disease — I'm pleasantly surprised to say we're actually not as negative as I would have expected. We're actually pretty darn optimistic, hopeful, and appreciative of life's simple pleasures, in spite of facing so many "diseases in one".
So it's hard to hear people speak ill of us. Whether we're accused of being whiney, self-absorbed, obsessed with being sick, or many of the other harsh judgments thrown at us, we must remind ourselves: these are just judgments. Plain and simple. These people would rather judge than understand.
Thank you for allowing me a place to write this. Thank you for letting me engage in some linguistic therapy, to share my story, and for your interest in reading it. Thank you for listening, and I hope my story helps others who've faced the same accusations to realize it's not you — it's them.