Why there are so few Lyme success stories....

http://thelymepost.blogspot.com/2014/11/lyme-success-stories-why-they-happen.html

It's easier to read on the actual site, but I copied it anyway.

..........................

Lyme Success Stories: Why They Happen and Why You'll Never Hear about Them
It was a little over two years ago, but I remember it as if it were only yesterday. After excitedly receiving my Lyme diagnosis, I went home and searched through every Lyme link that google spit back at me. I wanted to devour as much information as I possibly could, but as I went through site after site it suddenly began to dawn on me the harshness of my new reality. This would certainly be no quick fix. "People still get better though!" I thought to myself. I opened up my browser, and I began my next search. It was a simple search, that to my shock yielded little results. "Lyme Success Stories," would sit in my google search bar repeatedly for the next year. I was desperate to find stories that I could relate to, but I couldn't. I was angry, shocked, hopeless, I started to feel as if there was no way out of this. According to the internet, hardly anyone was recovering from this monster.



As time went on, friends put me into contact with others they knew who had made full recoveries from late-stage Lyme Disease. Many were willing to talk and even had very uplifting words. When I asked if they spoke to other Lyme patients about their experiences, their voices took a deeper, somber tone. Some relayed to me that I was the first Lyme patient they ever lent advice to, though some had been in remission as long as 15-20 years. I was taken back by this. We're starving for hope, and they choose to look the other direction and pretend as if it didn't happen. I couldn't possibly wrap my head around the fact that they had ignored others afflicted with the same thing that had caused them so much heartache and pain.

I promised myself that no matter what the circumstance, once I was better I would come back and share my story as much as possible with other Lyme patients. However, as time passes and you experience the traumatic nature of not only the illness, but society's reaction to it, you start to step back. As I started doing better, I turned my back on the Lyme community. I didn't even utter the word Lyme to others for over a year and removed myself from all Lyme support groups. It was too much, I didn't want to go back and relive what had happened to me. I didn't want to just be this illness, I was tired of my entire self being consumed by just this one thing. My entire identity couldn't be wrapped around only this, I was more than just a Lyme patient. But I would receive calls or messages from people who had a loved one with Lyme begging for any typer of guidance. It brought me back to how scary those times were, how I was in dire need of hope or guidance and it made me realize that I need to be better, we all need to better.


I know many of you are sitting or have sat in the same chair I once was with your new diagnosis. I know many of you are very discouraged with the lack of people reflecting on their paths to wellness. Unfortunately, we don't have our own Lance Armstrong, and one isn't likely coming anytime soon. I will say this though, the odds are on your side that you will get better! I've been to a physician who treats Lyme and has recorded the success of all his patients. He saw a huge improvement with at least 85% of his patients, and a little over 50% of those were able to reach full remission. These results for the most part are typical for all good Lyme-Literate Doctors. With those success rates, there should be thousands of recovery stories littered all over Google and Facebook, there should be tons of memoirs about their recoveries as well, right? If you've searched the internet, or your local library, you likely know this isn't the case.

Many of us are told that their illness isn't real, even those closest to us may not even believe us or think we're at they very least being overdramatic. Not only are we fighting a monster in our body, we're fighting society's perception of that same monster as well. By the time many get well, they're so exhausted of having to explain their stories or symptoms that they just want to move on. Besides, no one took them seriously before, so why is anyone going to celebrate overcoming an illness they believed wasn't even legitimate. If you were to tell a person walking down the street, "Hey I beat Lyme!" their reaction would likely be a very sarcastic, "Good for you." The narrative of overcoming Lyme Disease isn't seen as heroic as it might be with other illnesses. One day when awareness and research catches up with reality, maybe it will be, but that's not how it is now. The majority of patients think of Lyme Disease as a nightmare they never want to look back on. When they reenter back into society as a healthy functioning citizen, they're most likely trying to recuperate finances lost from paying large medical bills, and making up for all the time they lost while recovering from Lyme.
Many have given years to the recovery and don't feel they're in a position to give any more time away. They need to get back to their loved ones, not to a medical community that treated them as poorly as humanly possible.

I'm not saying any of this is right way to handle it, but it's the reality of the situation. However, I do feel we all need to make a conscious effort to give back and at least put our stories out there for others. If you have recovered from Lyme or know someone who has, put it out there! The hope that it creates for others is certainly worth the time it'll cost you to write it out. So make a promise to yourself, "When I am feeling better, the fight is not over. I still must help others so that no one has to experience what I had to." If you can make this commitment to yourself, the world will be a better place for it.

Too bad we don't have a list of people who have gotten well over the years and moved on. That would help a lot of people to cope with the slow recovery if they could see a list like that.

I think it is always good to help others. It does not mean that everyone will. However, it is the right thing to do.

From what I have read, I agree with Garden Peace. There have been a lot of people who have healed and moved forward with their lives. We will heal too. :)

I don't know how it would be feasible, but it is a good idea. Maybe we could have an optional database for people who are willing (at least now) to help out later on a going onward basis.

Yes, Admin has rules about how many "sticky threads" (like the "New to Lyme? thread) can be on each forum on this site. The only thing we can do is to start a list of our own and put it in the "New to Lyme?" thread.

but honestly - that's one of the main reasons I have stuck around for so many years - to tell people that there is always hope of healing - always. I just couldn't be one of those that walked away. I felt like my suffering had to count for something. So I use it to help others.

I too wish more would stick around, but if you post here long enough, you will see a few that come back to post. We have one member that posts at the beginning of each year telling people that she healed and how (briefly) - others pop in now and again - like Deejavu.

And here are a few more that I can post about:
www.healingwell.com/community/default.aspx?f=30&m=3069820&p=1

www.healingwell.com/community/default.aspx?f=30&m=3084102

But just to be clear - no one can be required to post their success story, as everyone is so excited to get on with their lives and just forget about the horrors they went through. I don't blame them one bit. But we could certainly keep a list of members names (not real names) that would like to offer them to show others that they too have healed.

We only have one sticky thread though... can't we have two? One new to lyme the other healed from lyme, success stories. ?

I would love to post a permanent story, esp. if my son ever does get well. A permanent thread for those with teens with serious psychoses.... I'd probably prefer not to post it all of the time and go down the road over and over. Like this story says, I'd like to someday crawl out of our darkest times, a pit of seeming abyss and enjoy life happily again (provided I make it through all this myself, physically and mentally) but be there for others. I'd keep my email enabled to do so... but what I wouldn't give myself right now to hear total psych cases healed. The stories I'm still hearing are not good or hopeful. :(

Utahgal said "But, anyone with an ounce of humanity or compassion would feel compelled to at least post it once to help others!"

I am so sorry you feel this way Utahgal - I just want to tell you of one thing you are forgetting.

There was a lyme forum member I met in person last year some time. She was scared out of her mind. She said to me that once she is healed, she is never looking back. Not everyone has the strength to look back and tell their story. Sometimes it is just too painful to even think about. So some people do indeed put it behind them and never think about it again. This has to be understood - and you can't be angry about it. Yes, there are plenty who just don't bother to come back, but there are enough that just choose not to. Just bear this in mind, maybe it will lesson your anger a little!

You have success stories from me, yogi, denise, traveler, and a few others on here - hold on to those, and hold on to hope!!! xoxoxo

I'm apparently in the wrong support group.

I won't be posting here anymore.

Well I'm confused as to why you would leave over where to post success stories, Utahgal? If I was offensive, please believe me that it was not intended. And if I as offensive, please email me and let me explain further.

Utahgal - how could you say that after everything everyone has done for you? You know I stay on here to help you guys, and Traveler too - Look, take a deep breathe - I know how frustrated you must be. But this is the best Lyme support group in my opinion by far.

If i said anything to upset you, I am sorry - but you just have to try not to get angry at those who don't want to help others - they have their own problems and issues to deal with, and just appreciate those who do stick around.

Let us know what you need Utahgal - we are here for you!!!

My intention for posting the link above was to help the new comers understand why there aren't many success stories posted. I know I was freaked out by not "seeing" others recover. I want people to know that there are success stories! It was meant to be a helpful post!

I do believe that if you are someone who frequents these boards for help and support to get you through the hard times, that once you recover you need to pay it forward. What does that mean? For some, like Traveler, it means remaining active on the board. For others, it means popping in 3-4 times a year to cheer others on. Or, it could simply mean making a one time post saying nothing more than "I beat Lyme.....and so can you." Nothing more. That one sentence took me 10 seconds of my life to type. But, those words could be just what someone needs to hear!

I am deeply offended at the suggestion of my lack of gratitude or appreciation to the members who have helped me. Not only have I thanked those members publicly on this board, but I have sent personal emails to them expressing my thanks. It is very unfair, and flat out wrong to suggest otherwise.

As sick as I am, I try to help other people every day on this board. I am not very knowledgeable about this disease, but I offer my support and encouragement.

Although I no longer feel I can be a regular member of this forum, I promise to visit once I beat this disease and post my success story to pay it forward. I do have more than an ounce of humanity and compassion.

Anyone who needs my support, please feel free to email me.

Mods, please lock this thread.

Thank you