I'm writing this partly for self-sanity, partly for all the other Lyme patients brave enough to embark on this journey of healing and up against one of the most difficult challenges in their lifetime: being misunderstood.

I hear this frustration over and over again from Lyme patients. I lived it.. And even though I am now well, it is really starting to get to me….again. Let me at least say that much. I know what you are going through. I get you.

There seems to be a great disconnect between the effect of positive thinking and the detriment it can bestow. I've noticed this most when I was in India, land of Eastern philosophy and psychology. Land of "it's all in your head." And for me, ultimately and thankfully, land of “getting my life back.”

For all of you too sick and tired and frustrated to explain yourselves, I've decided to do it for you...publicly. Point people to this post when you can't repeat it yourself anymore. Tell them Amy said so, and make them listen.

Positive thinking is one of the most empowering tools that one can have. All of you who have been suffering with Chronic Lyme and who have been searching for years for a cure, have it. Or you would not be searching. For those of you in India.....you undoubtedly have harnessed that power to a great extent. It made you get on a plane for 20 plus hours, armed with faith and the positive belief that this would work for you. That this would be the end for you of a life that some days is hardly worth living.

And now you are there, away from your beloved Lyme doctor, the one who "gets you" and amongst a different culture, which is telling you something totally different. It's a culture enveloped in the belief of karma, that the mind leads and the body follows (admittedly true to a point), that if you ignore the disease....it will go away.

I know what you are all thinking....what a nice fantasy land to live in. I thought the same. I had people tell me that if I only I didn't pay attention to my pain, it would go away. And all I could think was.....so I have been wasting my money and my organs all these years on treatment and medications and far fetched remedies? And all I had to do was stop paying attention to it?! Ahh…….all of this wonderful advice, from you guessed it, perfectly healthy people.

I want to spell this out for anyone who doesn’t understand. It seems even those who see it, still don’t get it sometimes.

• The Centers for Disease Control admits that more than 200,000 people may acquire Lyme disease each year (a number greater than AIDS, West Nile Virus, and Avian Flu combined).

• It literally invades the body, including the central nervous system (the brain).

• It robs lives.

• It takes families hostage.

• Lyme doctors dedicate their lives to figuring out this disease and they still can’t cure it. It’s complicated beyond measure.

• This disease comes with major psychiatric implications. Psychiatric is totally different than psychological. We are talking altered brain chemistry; not anything that a good attitude and a walk can cure.

• The number one reason for death with Lyme Disease is suicide. Yes, that’s right.

Unless you have it, you can never ever begin to understand it fully. Not if you are a doctor, not if you are a loving family member. Anyone who tries to tell you they know better, is disrespecting (probably subconsciously, but even still) the courage it takes to live like you are living.

Just as positive thinking and Eastern philosophy can be empowering, it can also be a weapon. It can also symbolize blame and the “you’re not good enough” bullshi*t that so often comes with it all. So, I’m here to set the record straight.

If you are sick, it’s not your fault. If you are not getting better fast enough or in the right way for others, that’s their problem, not yours. If no one is listening to you, talk louder. Scream if you have to. IT IS YOUR BODY. You know this disease and you are the best adviser for your health. In the end, if you don’t listen to yourself, you will suffer, no one else. You definitely have to have a balance of letting go, and still doing what you have to do for you; but you can find that.

This disease is real and if people tell you that you look stunningly healthy but feel like you are dying inside, that’s not okay. I never looked “sick” a day of my illness, but believe me, I would have taken it in a second for having enough energy to get out of bed, or a few hours without excruciating pain or nauseating medicine. No one would dare tell a paraplegic that they weren’t paralyzed…that if they believed they could just jump out of their chair and walk, they could. So, why is it at all ok to tell a chronically ill person with an “invisible” disease that they can cure themselves if only they try harder? 

I am the first to admit that there is so much to learn from other people, other schools of thoughts, etc. And I definitely admit that being a slave to your disease "feeds" it. I also believe there is an emotional component to physical illness. 

However, I honestly am and have always been a borderline annoyingly optimistic person. And even that extreme didn’t cure me of Lyme. Trust me, I tried. I look back now and can only justify it by thinking “it wasn’t my time yet.” I still had more to learn before my wellness appeared.

In fact, I struggled so much with everyone telling me that if I was perfectly positive, I’d get better; that it actually made me worse. I cried endlessly wondering if it was my fault. Was I not positive enough? If it’s so easy to change, why am I not better? Do I not deserve wellness like the healthy people lecturing me and telling me it’s so easy? I had bacteria eating me alive. It was not listening to my positive thoughts. It listened to lots and lots of antibiotics only, and still didn’t listen like I would have liked.

It caused me the most unimaginable amount of stress to be bombarded by those who thought they knew better than me how I could fix myself, even if they were only trying to help. And stress induces illness by causing a weakened immune system -- my precise problem in the first place. What kind of help was that?

So for anyone who doesn’t understand, who doesn’t have this disease -- I am pleading. It doesn’t matter if you are a doctor, a scientist, a genius or G-d himself. These people are on a major healing journey and they are hurting and aching and fighting the whole way through. Think long and hard about how you want to be a part of that journey; one that could change a life forever for the better or for the worse.

Do you want to be a cheerleader on their path, or one of the people who dug holes and watched them struggle more than they had to? 

And for those suffering....rock on. You are absolutely perfect just the way you are.

(For more information on Lyme Disease and to watch a short clip of the documentary "Under Our Skin," visit: http://www.underourskin.com/watch.html)

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I thought in this post, an excerpt from a post last January would be appropriate. It reminds me how very far I've come and how almost (but not quite) I can laugh about it all now:

I am immersed in eastern culture where it is believed karma plays a part in everything, the mind is undoubtedly the root of illness and if you want something bad enough, you can have it (or if you don't want something, you can wish it away). And to be fair, I believe it and embrace it to an extent beyond what I think so many would even consider. The connection between mind and the physical body are real. But, after six weeks in this spirited place, I will bluntly say…..it is not the dust, the food or the sight of poverty that eats away at me. It is getting used to a world in which I am the outsider and the majority seems to think they know what's best for me more than I do for myself. With the exception of a few beautiful souls here that have so graciously shared their own spiritual journey with me, and a couple of amazing doctors, it has been a struggle to stay grounded. It is in the unique melting pot of America that I never realized affords the absolute luxury of doing things any which way you like, if even it works only for you.

It's probably been the one thing I haven't coped with well at all in the whole course of this illness; the judgment of those that haven't walked or limped even an hour in my shoes. I'm sure they'd immediately want theirs back.

Ghandi said, "Strength does not come from physical capacity. It comes from an indomitable will."

To all the people in this lovely country who have well meaning ideas of how I could be doing a better job than I am struggling with a near impossible illness while still managing to live this incredibly fulfilled and happy life, I'd like to say: Leave my sore feet, painful joints and weaker-than-you'd-like muscles alone. I'm fine with it. My body is healing at its own pace; one I'm undeniably proud of. Now, can you please get the heck out of my way? I have places to go and you are totally raining on my parade.