Sunday, April 24, 2011

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.


24 comments:

  1. I like this post and completely relate. You're a good writer, Leila!

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  2. Excellent piece and right on the money!! Although I would NEVER wish this disease on anyone I sometimes wish they could know just for a little while the suffering we bear every single minute as the years go by. Thank you, you write beautifully.

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  3. Wow !!! Well said ! My daughter has Chronic Lyme Disease , been mis-diagnosed over 10 years ! I'm from Delaware, gone to the Governor and waiting for a response !!Trying to pass a BILL--Educated these Docters--Upgrading these test for Lyme & Ins companys to cover Medical & Docters to turn no one away & also Make Awareness of this Disease in the whole State OF Delaware !! I'm working as her Mother & caretaker on this --I will not stop till i get to the finish line !!! Elsie Kenton

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  4. Ugh. Hello, de-friending! I always get asked how long I need to be on abx. The answer is...IDK!

    Don't even get me started on how we are not taught snot for Lyme. Grr.....I wish I had your ability to pick battles, and shrug off the comments. It riles me to no end, and I fuss over it for what seems forever.

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  5. Bravo, Leila! So well expressed.

    My fb posts are also generally "happy-shiny." I don't dare post about the real day-to-day for concern about being completely tuned out when I have important info to share about Lyme... which I'm sure is all but ignored.

    This network of people - Lymies - is critical to our health. We, collectively, have more experience and knowledge to share about symptoms, treatments, and side effects than all but maybe a few of the best LLMDs. There's support available 24/7.

    We do what we do - including awareness and advocacy - when we're well enough so that one day soon people won't suffer for lack of diagnosis and treatment.

    Here's hoping that those who ignore and tune out are spared the ugly, deceitful cocktail of the Lyme infections and politics.

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  6. Well written article. Thank you for expressing what I'm sure many of us feel.
    Kathy

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  7. Leila, I love this post. I'm in remission from Lyme and Babesiosis (dealing with a reexposure to Bartonella now from a cat scratch), but I still think of myself as a member of the Lymie community because I feel like it's a place where I can totally real about my life, and they get it.

    I don't identify with the disease at all, but I identify with the people who have suffered and who still are suffering because of the disease because we've been in each other's shoes.

    Thanks for a beautiful, well-written piece on this.

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  8. Well Written.I can identify with this.from one lymie to another thank you for your voice. i am a nurse also and i m appauled at how uneducated the medical field is with this disease.

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  9. Amazing post. Its exactly how I feel only I could never say it to eloquently.My kids and I just came up on our three year treatment anniversary. DD is in remission, DD and I are not so lucky. DH is disabled from it and most likely will never get better. At least not in the near future.

    Thank you so much for "reviving" my courage in not giving a $%#@ what other people thing- that I am a hypo, a complainer etc. If they only knew how much more I could say LOL

    keep on fighting the good fight!
    hugs from a fellow Lymie.

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  10. Excellent article Leila. Just hope some 'non-lymie experts' take the time to read it.

    I agree that the fb Lyme community is generally a very caring community and I have experience their support for about a year now.

    I also like to get the word out in South Africa but it seems to fall on deaf ears too and there are also the many other 'experts' who have NO idea of what they are talking about. Unless you have Lyme disease you cannot presume to know anything about it.

    I often wonder how many people are wandering around ill with lyme and it's co-infections, not knowing what it is that ails them!!

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  11. Excellent post - don't give up the fight to educate others - you do it very well. I am also in remission at the moment after being in treatment for 2 years. Lymies need to unite to make ourselves heard and understood!

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  12. Awesome post and hope you don't mind me sharing this on my facebook page... You state it just like it is and it all makes sense to me..and if it makes sense to me...maybe it will make sense to some of my friends and family who have no idea what us Lymies go through each and every day!! Good job Leila

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  13. Comment Part4 (last)
    It sux...and they don't see it...because they think that if I can write like this, I must

    be just fine. Ask my friends, you'll get a different perspective- No, Jerry isn't what I

    would consider "fine", but he is nice guy. That's a nice way of saying he definately is out

    there! :) and I'm cool with that. I promised God I would drop facebook, but I left the

    account open for the world to see- What it is to be as honest as possible. It was something

    I wanted to do to show we're not happy all the time, and I am so proud of bothe the people

    who hold back and those who go ahead and reveal that ugly side. I did it because I seen

    some people would bag on one another for revealing their vulnerable side...WE'RE HUMAN,

    right? Some will try to use it against me, and when they do, they will be drawn into the

    light. When a Lymie comes against me, they to will be drawn into the light...and guess what

    sweetheart? That's fine. Because we are already huddled together in the darkness, begging

    to be seen, but what many don't see, Gods light is shining on us. We will not suffer the

    light, but rather reflect the light upon others, as they come to see, that we have been

    blinded by the light of the world, and God intends to consume that light with His. I will

    rush to the side of any person who is blinded by the light of the world...especially

    LYMIES! And you dear friend, will do the same! :) God Bless! (:
    PS- Please understand, the thing with me quiting facebook, is a whole nother story in

    itself, and I think it's great for some folks, but I went against my better judgement and

    broke some of my own rules when startng facebook, and for this, I had to let it go. I would

    also advise folks not to make a promise to God before the world, for now I see, that

    promise is between me and Him and He's the only one that needs to know!

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  14. Comment Part1-
    You my sweet dear ARE so beautiful! :)
    Why do I say that? I'm in tears! Tonight, as I sit here contemplating a huge decision I face regarding an issue at school,(a side story to our Lyme suffering) I'm asking myself- Do I really want to go there? Do I really wanna walk the line for my friends again? Can I? Will my Lymies understand? You sweetheart have answered that question. YES they will. I've never read your blog. I've been suffering for quite sometime now, I stopped counting the days. I've read very few blogs,in fact, I wondered if Lymies would be offended if I used the nickname "Lymie". Why? Because the first time I used it openly, during an appointment with my Lyme Doctor, He giggled a bit and said "You call yourselves Lymies?" and smiled. I couldn't help but smile as well, he's so caring and concerned. I said "UMMMM,I don't know,I call myself a Lymie, to help me accept what I can't help." I have 2 deaf brothers, people have called them Deafies, If I were deaf, I would embrace it, because that's the best way I can see, that I would be able to disarm them. Many other situations have I seen, that the mere act of doing so, takes all the fun out of their cruel ignorance! I hadn't heard anyone else use the name "Lymie" before I used it, and it was actually a play off of Deafie for me. Step up to my brother and say it cruely in my presence, and they might find it a bit painful:) (not they as in my brother-they as in the person who said it) because now they are drawn into the light, where I can see them for who they are! Funny how you also mentioned something dear to me...Deaf people, as I mentioned on a talk show,Neal Boortz,ARE A SUB-CULTURE! You're right-So are we. Cultures don't just appear, they are a by-product of
    something else...they are extracted,and measured. We, long for that extraction, for until then we have not been validated, and without that validation, we shall suffer-long the denial we face everyday. So many more will continue to suffer until the denial is put to and end, becase yes- our culture is growing by leaps and bounds, faster than AIDS, and Aids is validated! I'm not saying it's less important, I'm saying it's validated. (for those who might not understand- We Lymies aren't trying to elevate our disease as more important) you know what I mean...you have suffered this condemnation before I'm sure.

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  15. Comment Part2-
    I want you to know something. I did something similar on facebook. It became my facebook project in-fact. (it was part of my own research as I progressed in my therapy---We researchers do things like this when we find ourselves in a unique learning situation) I actually tried to do the unthinkable. I tried to create a profile that was as close to my real identity as possible, encouraging, happy, not-depressed, uplifting, smiling through the pain- A crime I would ultimately lose my job over,(not the facebook part- the positive person part- while suffering the effects of the bacteria) I realized, that I was holding back the truth, how I really felt, I downloaded my data, and I started over, I was finally coming to terms with a very scary side of Lyme...but it was also beautiful! Beautiful Scary Schizophrenia! Many think I'm wacked! NO! I was a person! A person who loved for so long giving myself to others, It was my duty! It was my job! To help others overcome the obstacles that they knew not how to battle! I am a technical troubleshooter by trade in the field of Information Technology, and I was taking calls daily from upset clients whom had a right to be FREAKING-OUT, clients with demanding customers waiting to pay their rent when the POS system on their side went down. Most techs around me couldn't understand WHY I WAS "SO DAMN CHEERFUL" and NICE for something our clients may have caused. The fact is, we have no right thinking that way! The person who calls in is not the person who caused the problem...they are the ones who are addressing the issue! JUST LIKE US! They had no idea how much joy I found in serving as an example-for them and the doctors who deny me and my people. It was like a blanket over the pain as I waited for my new doctors to find the evidence of what was destroying my BRAIN! :(

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  16. Comment Part3-
    MY HISTORY SHOWS I'M NOT A LYER! My resume details a person who accepts responsibility, and marches consistently up the ladder of success, clinging to integrity! It is sweet, precious INTEGRITY that has been lost! The only way for it to be restored is by repairing the cornerstone of that foundation: TRUTH! God has brought me a long way,and He revealed Himself during my Schizophrenic stges the most! NO, I didn't see Him, but He touched me none the less. He has an undeniable way, by GRACE, of revealing Himself to those who suffer deeply,and His Words are the most gentle and POWERFUL force- one which can melt the coldest of hearts, who have fallen, ready to give up their fight, throw it all away...because they were losing their Faith- clinging to Faith...I was clinging to Faith, and He raised me up off my cold basement floor and told me it was going to be ok, to Trust in Him, that is what He said, He wrote it on my heart, and I smiled...again. Everyday has been a roller coaster since then. It always has been, but this one, is a new ride, 10 times bigger. OOPs I exaggerated, 7 times bigger! :) God Bless You Sweet Love, I am ready to do what I contemplated- for this post is much like a GO AHEAD sign me. PEOPLE NEED TO KNOW THE TRUTH! WE ARE WORTH FIGHTING FOR! Pick your battles? We didn't pick any battle, the battles pick us. I lost much of my ability to pick and choose my battles, when OCD set in. Oh I try...but I fail miserably. I become depressed when I feel I've given up, when things are incomplete- that is key, in-fact it is valid and quite relevant. Yes it's odd, because I used to be able to make quick and timely decisions. Now decisions are mixed; battling one another; stealing my time; begging for validation- and I don't know which one I should choose to validate...sound familiar? :)

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  17. Comment Part4 (last)
    It sux...and they don't see it...because they think that if I can write like this, I must be just fine. Ask my friends, you'll get a different perspective- No, Jerry isn't what I would consider "fine", but he is nice guy. That's a nice way of saying he definately is out there! :) and I'm cool with that. I promised God I would drop facebook, but I left the account open for the world to see- What it is to be as honest as possible. It was something I wanted to do to show we're not happy all the time, and I am so proud of bothe the people who hold back and those who go ahead and reveal that ugly side. I did it because I seen some people would bag on one another for revealing their vulnerable side...WE'RE HUMAN, right? Some will try to use it against me, and when they do, they will be drawn into the light. When a Lymie comes against me, they to will be drawn into the light...and guess what sweetheart? That's fine. Because we are already huddled together in the darkness, begging to be seen, but what many don't see, Gods light is shining on us. We will not suffer the light, but rather reflect the light upon others, as they come to see, that we have been blinded by the light of the world, and God intends to consume that light with His. I will rush to the side of any person who is blinded by the light of the world...especially LYMIES! And you dear friend, will do the same! :) God Bless! (:
    PS- Please understand, the thing with me quiting facebook, is a whole nother story in

    itself, and I think it's great for some folks, but I went against my better judgement and broke some of my own rules when startng facebook, and for this, I had to let it go. I would also advise folks not to make a promise to God before the world, for now I see, that promise is between me and Him and He's the only one that needs to know! :)

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  18. I saw your post after clicking a link to mommalyme, and she wanted me to make sure I knew you had wrote this blog. Indeed your message is so encouraging. It's so hard to imagine having so much in common, when I feel so alone, so often. I have folks who love and care for me, but when we fall through the cracks, it's so hard to climb out. Thank You so much!!!!

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  19. I never wanted to call myself a "Lymie," I've always thought, I have the disease, but it doesn't have me. But lately, the disease's ugly little claws and toxins have dug into me pretty deeply, and I'm starting to feel pretty lonely - i don't like to talk about it much with my friends, I've tried explaining that talking exhausts me, but that's a pretty hard concept to understand, now I'm finding it pretty hard not to be understood. I thought the stomach problems and body aches were bad, but this chronic fatigue is unexplainable to anyone who hasn't had it, and the brain malfunction is even worse. I guess I'm finding myself more and more on lyme websites and blogs, looking for a community of "understanders," i feel so tired and need some encouragement...

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  20. Well done. I wish you peace and comfort my friend. This disease truly does suck!

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  21. Thank you for writing this! I could relate to so many things you said. It was helpful for me to read this. I have been called a "whiner" and a "plastic phony" and told to get a job and get my life together when I was fighting for my life! People can be so judgmental, cruel and ignorant. It's shocking. When some of us have needed practical help and loving support the most, the "demons" have crawled out of their closets to attack when we were most vulnerable. Not the type of reaction I expected. Thanks for the good example of patience in the midst of trials.

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  22. I also use "Lymie" because it's so tiresome saying "person with Lyme disease" or "people who have Lyme," etc. And "Lyme patient" is the worst one because I hate the word "patient"! So, Lymie it is until someone comes up with something better.

    No, people don't understand how isolating it is to have a "mystery disease" like Lyme (which shouldn't be so mysterious considering the number of people who have it and the amount of research and documentation that's out there on the subject). We've joined the Lyme Club out of necessity, not out of desire, contrary to what some people think. Reactions from friends re: my Lyme have been disappointing to say the least, but I've decided that I'm not going to protect them from the disturbing details anymore. I've started to be open and honest about what I'm experiencing and if they can't handle it, they don't need to see me anymore. It's time to take off the mask. Lyme is a big part of my life and I'm not going to pretend like it isn't, like I have in the past. It's the moment of truth for me as far as friends are concerned. Thanks for the post!

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