Teeth-gnashing Frustration Re: Lyme Disease
Do you remember when AIDS was first discovered? Do you remember the stigma attached to the illness and how that stigma created much more pain and devastation than the physical illness itself (as if it weren't bad enough)? Who can forget, actually? The patients... the disregarded... fought like hell to be recognized and respected, treated and researched. No one ever thought AIDS could be successfully treated or that people could live productive lives after diagnosis.... but how wrong that was!
Some day the world might say "Do you remember when Chronic Lyme Disease was believed to be untreatable, in fact when it was actually disregarded as a disease altogether by the Infectious Disease Society of America? Ludicrous but true."
Maybe some day doctors will stop telling their patients that this crazy compilation of symptoms is just the wear and tear of daily living... and stop saying things like "here take this anti depressant and try to get more sleep" to their 30, 35, 40, 45, 50 year old patients, who are experiencing crushing fatigue, mysterious pain, depression, anxiety and mental confusion.
I am bitterly disappointed by the IDSA’s refusal to change their diagnosis and treatment guidelines for Lyme Disease, for the sorely lacking scientific research, and the lack of agreement on effective treatment for this disease that has taken my career, my energy, my hearing, my strength, and has chipped away at my self-esteem while the rest of the world looks on and says "poor dear... she is clearly out of her mind...".
I am doing all I can to change things... to push for legislation... to raise awareness - but in the mean time my life feels like it is being washed away slowly like a chalk drawing on the sidewalk. I feel like the world doesn't care what is happening... like they all think that WE are the crazy ones when really it is not us at all but the medical community (the lemmings who worship the IDSA), and the insurance companies who are practicing medicine without a license as they deny treatment prescribed by the few physicians who recognize and are dealing with the ravages of long undiagnosed, MISdiagnosed, untreated Lyme Disease.
So, I try to make the most of it. Since Lyme is so much like so many other things I find many of the CDs from Health Journey's to be very useful to me. Pain. Depression. Anger. Trauma. Okay... but help me to figure out what there is for someone like me, who has been swept to the side by the medical community at large. There must be something that deals with the lack of validation... the bitter disappointment... the betrayal by doctors who refuse to listen until it is maybe too late. There must be something to help people cope with the never-ending illness in the face of society's lack of patience with never-ending anything.
Sometimes I feel that this illness has given me many gifts... has caused me to stop and pause and look at what is really important... to let go of material goods and the pressure of career dreaming and climbing ladders.
But then there are times like this, when I am so tired of being sick... so tired of looking okay and feeling like holy hell... so tired of being disregarded and ridiculed. There must be something in the Health Journey's bags upon bags of goodies for someone like me... because there are a lot of people like me and I would be happy to tell them... if I could just figure it out.
The most difficult things for me are these: feeling invisible; feeling deep fatigue; feeling unpredictable and random pain; knowing there are corkscrew shaped bacteria boring into my muscles, my Central Nervous System, my brain, my organs; accepting the pain of treatment and the reality that the dreaded herxheimer reaction feels very, very bad, but indicates bacteria die off and healing.
The devastation of Chronic Lyme Disease is not just the disease process itself, but the perception of the disease, the way we are treated, and the risks doctors who treat us face every day the refuse to be lemmings... the very real fear that they could be run out of their practice like Dr. Jemsek, or Dr. Charles Ray Jones. Can you help me, please?
With gratitude for your work,
It sounds like you've had a terrible time with this. I wish I had more to offer you.
I can share this observation: it's hard enough to have Lyme Disease. I fear you're wearing yourself out even further by staying overwrought over things you can't control.
Energy is a precious commodity to somebody with this disease - please don't squander it by keeping yourself in a state of near-constant distress!!!!
It sounds like, to your great credit, you've done a lot to try and push the medical establishment forward. (And, based on the number of studies now being done out of the NIH and the number of new articles I've read, it is moving forward, although the results are unsatisfactory so far, except regarding what to do immediately after exposure, which is great. But consider when this disease was discovered - only 1975!! - they're lumbering toward a cure. (Small comfort, I know... but still..)
Additionally, I assume you've been to see whatever medical experts you could find and gotten state-of-the-art medical treatment - such as it is. (I know that the staff at Canyon Ranch in Lenox MA are very skilled at dealing with this, and have been for years.) And I assume you've figured out the best ways to manage your symptoms and stay as functional as possible. No doubt you've checked to see what Andy Weil and Mark Hyman and Keith Block have to suggest for maximizing your health with supplements and vitamins and everything else these visionary docs know to do...)
So, what baffles me is the extent to which, after being so commendably proactive and doing the best you can do, you are still dissipating your precious, beleagured energy on what you can't change. Honey, there just comes a time where you just have to let it go and give your psyche some rest, knowing you've done your best!
(You know that brilliant serenity prayer, courtesy of AA and Reinhold Neibuhr, although not necessarily in that order, but let me remind you anyway:
"God grant us the serenity to accept the things we cannot change,
courage to change the things we can,
and the wisdom to know the difference."
Focusing on being ignored and derided? Stop! On bacteria boring into muscles? Knock that off, Girl!! On the arrogance of certain doctors and institutions? Puhleeze, what else is new?! Reminding yourself you feel devastated? Cut that out!!! Of course you feel devastated. But why linger there any longer than necessary?
This repetitive, negative self-talk is not good for you and it does nothing to invite nourishment into your life from others. (As in, "Oh, dear, here comes that unhappy woman, who, no matter what I do or say, remains unhappy. Rather than feel feckless and stupid, I think maybe I'll just try and avoid her..."
Bottom line: You are running the risk of creating an identity as a victimized, devastated sick person. And once those identities form, they become sticky. We get attached to them, even when they're not pleasant. (They are grounding and defining in their own nasty way, after all.) And mind you, I'm not disagreeing with any of the content of what you're saying. It's just the degree of focus on the upset that concerns me.
So maybe you could stop focusing on what others are perceiving and get to work on your own perceptions - it's the only thing you can truly control anyway.
If you stay stuck there, I fear that more and more health professionals and friends will stop trying to help you; that you'll be perceived as somebody with emotional problems; and you'll feel worse.
People DO get better from this disease, sometimes after years of horrendous disability. Please stay focused on becoming one of them.
All best wishes to you for a complete and joyous recovery,
(Diana’s reply to this response is posted as this week’s Inspiring Story, because it inspired the heck out of me.)