Monday, August 15, 2011

Falling on Deaf Ears and the Lack of Proactivity Among Humans

I've been rather perplexed by human nature and human behavior as of late:
People who are chronically ill who don't want to heal. People who ask for advice but then won't take it. People who complain about problems they won't do anything about. People who aren't interested in learning new things. People who won't test themselves for Lyme when they likely have it.

I've learned during my thirty years on earth that humans really don't like to challenge the status quo. They get really comfortable, even when that comfort is with unwellness, and they settle. They settle in every capacity--they settle on health, doctors, jobs, on boyfriends, husbands, friends, and more. Why is that? Are they lazy? Frightened? Anxious? Complacent? Unconfident? Given up? Masochistic?

I don't know. I haven't figured it out yet.

 All I know is that, by comparison, I am so completely to-the-extreme opposite of this that it boggles my mind ferociously and endlessly. Completely unwilling to settle on anything, I fight the fights I need to fight, constantly seeking betterment, better health, better love, better knowledge, better truth, better friends, better experiences, better life. And this makes me very unusual, I've come to learn.

In the last seven months, I've spoken with approximately one dozen friends and acquaintances about their chances of having chronic Lyme disease. And not one has been tested yet.

There was the man who told me over dinner that he had horrible panic attacks, back pain, weakness, chronic fatigue, achey joints, allergies, a sensitive stomach, and had been bitten by ticks in his youth.

There was the friend who lamented at a birthday gathering that her mother had been suffering for decades from hormonal imbalances, neurosis, depression, arthritis, fibrous breast tissue, fatigue, weakness, respiratory problems, moodiness, and constant colds, flus and other infections, and happened to live in New England (where Lyme is epidemic) and been exposed to ticks.

Then there was the friend with awful anxiety, depression, nausea, irritable bowel with chronic diarrhea, dry heaving, lack of appetite for more than fifteen years, severe malnourishment and underweight body, chronic migraine headaches, chronic fatigue, and terrible PMS.

There was the friend with Hashimoto's thyroid disease, chronic gallstones, severe anxiety, vertigo, deafness in one ear, painful joints, digestive issues, acne, PMS so bad she's crippled by it, and very frequent infections like colds, food poisoning, fevers, flus, and such random infections so frequently that she takes a lot of sick days at work and people start wondering and speculating.

And there was the intern at my last job who's got a sniffly nose all the time, circles under her eyes, delerium, fatigue, weakness, brain fog, mood disorders, random fevers, and food intolerance.

And many others, totaling the aforementioned dozen I referenced above.

And yet, in spite of my efforts to explain to them that Lyme is known for causing all of these symptoms, and can be passed in-utero or sexually transmitted (to those who swear they've never had tick bites), and ultimately sharing names of Lyme-literate M.Ds in the area they can trust to get proper testing, not one single one of these people has seen an LLMD.

One, an ex, did get a Lyme test, but through an infectious disease doctor, not through an LLMD, and of course it came back negative. To those of you who don't know, a battle exists in the Lyme world between LLMDs, who recognize chronic Lyme, and infectious disease doctors, via IDSA (Infectious Disease Society of America) who give antiquated Lyme tests that only recognize *acute* Lyme, not chronic Lyme. These tests produce mostly false negatives. I include myself in the population of people who were given the incorrect test by a non-Lyme-literate doctor before I saw an LLMD, and guess what? My first Lyme test came back negative, too.

It's imperative that you get the Western Blot with individual bands, because only individual bands can indicate chronic Lyme. The A/B screen or ELISA test only shows one positive/negative reading, and that's the inaccurate test. Sadly, people with chronic Lyme have been duped into believing they don't have it because they've been seeing the wrong doctors.

So, the only person to whom I've spoken about Lyme and has actually pursued testing, my ex boyfriend, was given the wrong test. So technically, I'm at the zero marker for my success rate.

If it were me in their shoes being told that this disease could potentially account for my array for mysterious chronic symptoms that doctors have consistently dismissed in my lifetime, I would have run as fast as I could to an LLMD to get tested.

Not most people. They scoff at the idea. Usually it's the "it can't happen to ME" mentality, but sometimes it's something else. "I don't have Lyme." "I've never had a tick." "I'm not that sick." "I can't afford to see an LLMD." "I'm scared to find out." "I don't want to know." "My normal doctor says I don't have it." "I was tested and it was negative."

 Really? Okay. I don't get any of that, but I've always been weird.

And then I inevitably feel a rush of emotions and thoughts, some admittedly harsh: why do I bother caring, trying to help? Why? Why do I go to the trouble to educate people? Why should I show sympathy for their malaise? Why should I care if they get sicker and sicker? They didn't care enough to help themselves. If they get sicker, I'm not going to feel sad for them.

That may sound cold, and it may sound cruel, but that's the most extreme of all my reactions, and sometimes I can't stop those somewhat-dark and blatantly-logic-based thoughts from creeping in after my words fall on deaf ears.

I've come to the conclusion that I need to stop caring because nobody listens. Investing myself in others and being ignored make my nervous system (which is already under attack by a plethora of neurotoxins) suffer even further via emotional distress.

It's easier to let go and become ambivalent, but ambivalence is such a challenge to me because I'm not that person--I'm someone who inherently cares too much. But when it comes to a point where you yell repeatedly and louder, forewarning others of whatever threat may lie in their path, and your warnings fall on deaf ears, you absolutely must turn off your empathy. Otherwise you take on their hurt and you feel ignored, causing yourself harm. Ambivalence is what happens to me only when I've tried too much and I can't try anymore. It's what happens when my last-ditch efforts fail.

My friends, bless their hearts, are routinely poisoning themselves in myriad ways--everything from vaccinations to toxic food to steroids, and they don't listen to me. They trust their doctor over me. Their doctor "must be right". I rest my case. Goodnight, everyone.


  1. It doesn't do any good to agonize over the decisions of others. Tell them what you know and then give them the respect of allowing them to do with your advice/suggestions as they choose. Your challenge is to heal yourself. That is all of our challenge - to heal ourselves - if people don't listen - that is their choice - you don't have to like it - if you accept it- it frees you up to focus on your own healing - the only part of it you have any control of. Thank you for the article - it has me thinking - I hope you are successful in your quest to heal yourself. blessed be

  2. I go through phases with this, but I have one follower of my blog, one old friend, and one woman I met at a political function that all agreed to see an LLMD and start treating. Yes, my neighbors with kids with autism, my friends with long term depression and anxiety, my friends with RA and "Fibro" are many, and they don't "want" lyme. Totally absurd, because likely, they already have it. Denying just makes you sicker. Great post.

  3. Yeah so true. It's an important life lesson to learn: you can't change or fix people, they have to want to change or fix themselves. All you can do is provide information or give them a push, but they have to take the steps to do it.

    I'm the same way as you, I'm a fighter, I want to understand and know for myself how to fix myself and thrive, overcome anything holding me back. I take challenges head on. Probably helps that I come from a long line of survivor type people who never have up to adversity.

    I think the why is many things though. Some people just don't know any better, they think when you hit 40 you should feel shitty and doctors reinforce these misconceptions and false realities. They're raised with low self esteem or low self love. Most people really don't realize how bad they feel until they make big changes to feel better and can look back and see how bad things really were.

    Thank god for the fighters, the hell bent on never being quieted into a pharma drug stupor of acceptance.

  4. Also, overall, most people live in fear. And let their fear dictate their actions. It's unfortunate. Once you get the positive you have lyme, then you can live in pretend anymore and you have to actively treat it. I never understood that thinking either, I'm not afraid of much anymore, I want to know even if in knowing I wish I didn't know! LOL. Knowing is always better IMO.

  5. Amen, lady.
    Even though I probably don't have Lyme, I'd be open to getting tested. You know me and my PMDD and stuff...

  6. Very well written. I was just recently diagnosed with Chronic Lyme, among other things and as soon as I was led in the right direction-I researched and researched and researched. Made an appointment with an LLMD and began treatment. Since this time, I too, have informed friends that may be suffering from the same illness. I wish I had had this information presented to me, 15 years ago. The most I have accomplished is convincing a few people to watch Under Our Skin. I know I want better health. Nice post.

  7. Well written and sentiments we all feel from time to time but tomorrows another day and once again we find ourselves saying what we do about this dreadful disease in the hope that along the way some people are enlightened.
    The reason I started my blog was due to frustration with our newspapers.
    Blogging helps it is one way to spread the word and pops up in google alerts every time you mention another illness or wrong diagnosis.
    Through my blog several people have contacted me and benefitted from the links I have posted.
    So keep it up you never know where your seeds will fall.

  8. I have Lymes, etc. - I am getting better... I can be a great resource for those who wish to be brave and move forward.. please join me in my quest to help children and adults with Autism and Immune Diseases (Lymes, CF, FM, and many more)... I agree - one must be open to listening, taking charge of their destiny and not just trusting in what is... join me on FB - and hit L I K E on my FAIR page...

    Many Blessings,

    Heidi Carabine

  9. Leila ! I love your strength !!! I am with you let's get the info out thee. Hiedi i will help !
    find me at

    Also if we were to have a logo to show the strength of living with lyme or living to rid ourselves of lyme what would it be ~ i want to fundraise!

    Lainy VAn LAanen