We're Misunderstood

It's hard enough having chronic Lyme; it's even harder dealing with critics whose dissent is based in ignorance. If you haven't either lived with Lyme or studied its effects on people (or read my blog!), then you probably shouldn't protest our sub-culture, because you're being both unintelligent and unkind (not to mention closed-minded).

When I first found out I had chronic Lyme, and posted the news to my Facebook page, I expressed my frustration over the lack of Lyme-literate doctors who take insurance. Moreover, I stated that the standard fee for an office visit at a Lyme specialist was approximately $500. A friend, who clearly has zilch, zero, nada understanding of our illness posted a comment stating that I didn't need to see a specialist.

(I tend not to get angry over minutae; a major motto in my life is "Pick your battles." I ignored the friend's comment. Not a big deal.)

Now, months later, after I statused on my Facebook page that I'd spent the day in bed, the same friend left a comment alleging that I am not taking care of my health and suggesting that I get out of bed and be active in order to combat what he perceived as depression.

He was wrong on all accounts. For one, I am as active as I can be while combating a major (major!) illness. (Do people still not realize this is akin to having AIDS? Do people not realize I'm not exaggerating when I say my brain is infected?) In addition to staying pretty busy and productive in spite of this illness, I'm not suffering from depression. And I'm taking pretty darn good care of my health, by eating wholesome, nutritious foods, taking all my medications and avoiding stress. So whatever impression I've made on him is wrong.

Part of me has to question if it's my fault--that I'm not communicating things well, and that's why people make hasty judgments. Still, people should not judge what they do not understand. And the truth of the matter is that some days--very few, but they still exist--I spend most of the day in bed. Not out of laziness, depression, or any mental deterrent, but because I'm so physically ill that I can't get up and do anything. Changing my attitude and trying to be productive, as the friend suggested, isn't applicable because, well, I'm not his teenage children (so maybe he shouldn't talk to me like I am).

If you know me at all, you know that I'm not a chronic whiner. My "pick-your-battles" motto applies to venting my frustrations, too. I overwhelmingly avoid excessive complaining on my Facebook page, but every now and then I'm gonna say just how exhausted I feel. That's because I'm frank. Very, very frank, honest, bold. But if you knew the half of what I'm experiencing, you'd see my Facebook page as surprisingly uplifting and positive. So, if you know me--if you really do know the person that I am--you know I'm an optimistic, honest, frank, and soulfully deep person.

Another friend recently criticized me and essentially the entire Lyme community for labeling ourselves "Lymies". His claim is that we are choosing to identify with the disease, rather than blend in with the rest of the world. "I'd hate to be called a Cancerie if I had cancer," he said.

Oh, boy. It's time for Mama Leila to do what she does best: Explain. Stay Calm. Be Patient. Re-Explain if Necessary. Not Get Mad. (Alright, maybe it's not what I do best, but a girl can try.)

So, ahem, here's the thing about us Lymies.

We need our community of fellow Lymies. We are walking a very lonely, thorny path in our lives, and at every kickback on this path there are mountain lions and snakes and porcupines ready to jump at our feet. Our disease has no known cure, only treatments. Our disease is misunderstood in the medical world, with medical doctors and the Infectious Disease Society of America denying the existence of chronic Lyme and rebuking its treatments.

 You can't compare us to cancer patients or "canceries". Although they suffer greatly, and I don't mean to minimize their plight by saying this, at least they have the wholehearted sympathy, support and understanding of the world behind them. The very large majority of people don't have a clue what Lyme patients endure, and when given the opportunity to learn about it, they generally don't care to, until it's affecting them or a loved one. People still ask what the big deal is about Lyme and assume it's easily treated with antibiotics. Nobody questions the severity of cancer or AIDS.

Which brings me to my next point: We call each other Lymies because we want our voices to be heard. We want to identify with Lyme disease, because we're desperately trying to publicize our plights, and get our friends and colleagues who unknowingly suffer from Lyme in silence to see doctors. The world needs to listen to us. We're gonna keep calling ourselves Lymies and shouting about this disease because we care. If we didn't care, do you think we'd be so obsessed with Lyme? Don't mistaken our chatter surrounding this topic with narcissism--narcissists, by definition, do not care about anyone but themselves.

Ultimately, our name forges bonds between us. We understand each other's asinine quirks and symptoms and side effects because we too endure them. Most of us have spent many years being labeled hypochondriacs or freaks by doctors, and not fitting in with the world at large. So it's a heart-warming relief to have people to turn to when nobody else understands, not even the very doctors whose goal in studying medicine was to help sick people.

I know many of my friends silently question why I talk so much about Lyme disease. For each of the three or four people who've shared this opinion with me, there's ten or more that won't say it to my face. In fact, yet another friend just asked me why I and my other Lyme friend spend so darn much time talking about Lyme. I hope this blog helps them to understand.

And if they still don't want to hear about Lyme, they have the option of tuning out when I write about it on Facebook. It's not gonna stop anytime soon, folks. I plan to keep talking about Lyme disease. Sorry if that's a buzzkill in your martini- and manicure-filled day. At least you can have that martini and manicure; I can't have either. But I'm not complaining. I'm a warrior!!

(For the record, it's not all I talk about. I still talk about kitties, music, current news, and a plethora of other interests. Lyme hasn't swallowed me whole.)

But still, we're not gonna shut up. You'll start hearing more about Lyme disease as it becomes more mainstream in the near future. So tune out or turn up the volume, it's your choice.