Why is it that Battling Lyme Disease is so Doggone Perplexing?

Why is it that Battling Lyme Disease is so Doggone Perplexing?

Since I have become part of, what they call, the “Lyme Community,” I have met some of the most amazing people. I have also found that it’s a constant battle for so many and so doggone perplexing in just so many ways, battling the illness, battling to get recognition and a diagnosis from the medical community including doctors and insurance companies, and then battling among ourselves, i.e., what is the best treatment, is it curable, how you live your life with your illness, what you eat, how you go about treating it, etc. It’s thoroughly exhausting. (I myself was threatened and cyber-bullied when I decided to design this website.)

That is why I am sharing a status that was shared by a well-known advocate/activist in the Lyme Community on Facebook. She posted the following status; it hit the nail on the head for so very many of those battling this disease that brutalizes your body and mind:

“How many of you are scared to post any pictures or write ANY posts because you will be judged from people from within our Lyme community? If you post a picture of you doing something other than lying in bed, then you are “better” and not sick anymore or “as sick” as anyone else. If you post a picture of food that is not a freakin’ vegetable, then you are doomed to be sick forever; cuz, God forbid you go outside other people’s diet guidelines: No sugar, no wheat, no flour, no carbs, only protein, no protein, wahls, gluten free, no caffeine by drinking it, only by doing an enema is allowed. If you eat a piece of cake, you must not care; you must not want to get better.

God, I’m so sick of it–We all try our freakin’ hardest. We all do what we can, but we are human. We are not be perfect. We are going to eat a piece of freakin chocolate even though sugar is bad for us. We are going to go to a vacation, even if we are broke. We are going to post a picture of our cute dogs playing while we take them to the dog park even if we felt too sick to go, but we decided to anyways.

You know why? Cuz we still want to live. We can’t put ourselves in a freakin’ box and not live anymore. That, to me, is Lyme Disease robbing you of your life.

We should be there for each other to support each other through rough times; but, also we should be there to celebrate with each other when something good happens.

Stop judging. I see people’s treatment plans, doctors’ diets, activities, advocacy, and so much just judged to death on a daily basis by each other. STOP!!! Be supportive, if you can’t, then just stop yourself from hurting someone. We are each at different places in this journey. I have done the stay home and lay in bed and only talk about your symptoms thing. I have done the strict diet where you are not allowed to eat anything basically. I have done it all; I have done all kinds of weird whacky treatments that people claim are cures and the only way to get better; I’m still sick.

And stop judging the activists and calling them the “popular kids” or all these crazy terms I’m hearing, and stop saying this should be done this way or that way. If you want an event to NOT say protest, or if you want an event to be done a certain way, then get off your ass and do it! I’m sick of working nonstop to only be criticized constantly. I’m sick of seeing my activist friends being blasted for their work on these protests and other awareness events. You know they are working for YOU. So stop! If you can do it better, then get to work!

Right now, I choose to “live” with Lyme and still eat food and still go places and I will keep posting pictures of when I’m out doing stuff and not just pictures of me lying in bed sick. I hope others will follow suit. I’m so sick of judgment. Not only do we get it from doctors, families and friends–I think we get it worse from people in our own community.

I’m not talking just my experiences; I’m talking about mine and all the emails I get every day. People have to email me privately when something good happened to them because they are afraid to post it on their own walls!! Grrrr at that. It’s ridiculous! Not one of us are perfect and we are all suffering. So keep the opinionated opinions to yourselves please. Let people go through their own journeys and support them in a loving way. Not a judging way.”

I think a lot of this could be avoided if the IDSA would be at least open-minded to restructuring their outlined treatment guidelines that the CDC currently uses. Each year, actually every day, I hear from someone that is dealing with persistent Lyme Disease symptoms due to not receiving the current diagnosis or not being treated adequately. We also need a more accurate way to test for Lyme Disease and the other tick-borne diseases such as ehrlichia, babesia, bartonella, rickettsia, Rocky Mountain Spotted Fever, etc. (Yes, I realize I said tick-borne diseases, I know it has been found there are other ways of these disease being transmitted, I use this term since it is probably the most common way of it being transmitted; we know that there has been research that it may also be a STD. Then, of course, blood transfusions also are a danger. More perplexities of dealing with Lyme Disease.)

The bottom line is do what you and your doctor feel is the best for your health.

I would like to thank each and every one of you that take your time to advocate for all of us Lyme Warriors and Survivors!!!