I am thrilled that the topic of Lyme disease has become more prevalent in recent months, more news stories, more publicity, more articles…….even if they don’t always have all the facts right, at least the information is getting out there. I’m noticing that since the topic has hit big news, it has become the new “in” thing to talk about. It’s the new breast cancer……….the new HIV………..the new chronic disease that everyone is talking about. This is good! I’m happy that people are finally recognizing that this disease is an issue and talking about it. Maybe now we can get something moving with this political mess. But, I wonder if some of these people are ACTUALLY getting it, or just talking about it because everyone else is. It is perplexing to me………….bittersweet.
See, for many of us, we have been talking about this for so long, trying to get our family, friends, doctors, communities to listen and understand the horrors of this disease. But how do you explain to someone that the pain is unbearable sometimes; that I can’t sleep, can’t think, I wake up drenched in sweat, and half the time I don’t know where I am or what I’m doing. I’m 39 going on 80. I have friends who live 24/7 in a chair because they are too weak to use the bathroom, walk, or make a cup of tea from this disease.
At the very least, every May, we all send out newsletters and awareness information in hopes that someone will listen, heed the warnings, and maybe save their lives. Sadly, it often falls on deaf ears, closed minds and hearts. And with the exception of those dear and wonderful souls who have stuck by us from the beginning, cheered us on, and gotten involved………….we were often ridiculed for even bringing the subject up, or worse…ignored. A lot of people didn’t believe it was that bad, that we were exaggerating, trying to get attention, or it was “all in our head.”
Don’t get me wrong, I understand……..no one cares until it’s a talking point on the news and you can say you know someone who had it and was “cured.” Like any chronic disease or cause you hear about, until you can feel good about yourself somehow for participating, you don’t care. Maybe you wear an armband, a ribbon, or put a bumper sticker on your car to advertise that you care, but do you really? We are all guilty of this honestly. How many diseases do we all not know about that someone is out there trying to educate people on? How many of us have short memories even when we do hear about it. I guess the difference is…this disease has taught me to listen when someone calls out for help, or tries to pass on information from their own struggles and illness.
The difference is that like many others, I needed acknowledgment and support from family and friends over 2 years ago when I was diagnosed, and over the past 10 years while my health has declined. Now that it is the buzz, many of the people that weren’t there when we needed them the most are now reaching out. I think this is valiant if their intention is pure. I don’t want to discourage anyone from saying to a loved one: “I’m sorry that I did not listen to you in the past, that I may have even ridiculed you. I’m sorry that I didn’t take the time to understand what you have been going through. I’m sorry that I didn’t believe you. But, I want you to know that I am interested in learning more and helping now, if you will let me.”
The truth of the matter is most people won’t approach it this way. They will send email links and share information with us as if it is new information, and this can seem insulting at first. In many cases, it could be…..for all the reasons I listed above. I say all of this, because I recently had an experience that left me feeling deeply insulted. And I felt compelled to respond in a very straightforward manner. Now, I sit back and look at it and wonder, perhaps that was the only way that person knew how to reach out, whether it was appropriate or not. Am I not just furthering the suffering and ignorance by not allowing them to join my world now…even if it seems too late….even if the wounds are deep?
Here’s the thing. I can understand the fear that others may have when they see someone facing this disease….I can even understand them NOT understanding this disease…..half the time I don’t understand it! While I can understand that the desire is not there for the general public to become informed…..I have a hard time understanding how close friends and family can abandon their loved ones, not believe them, not support them, and not even give them the benefit of the doubt and try to learn more about what they are going through. Even being genuinely asked how we are doing is SOMETHING. This is perhaps the biggest injury Lyme sufferers face with this disease. No one wants to deal with it or us.
I guess you could say we’ve all had enough with the pleasantries of this topic. While I encourage and want everyone I know to ask questions, to learn about this disease, and I would love nothing more than for them to reach out to me right now……I would also encourage anyone who maybe DIDN’T do the right thing with someone they know with Lyme to approach it gently and lovingly. There has been much hurt, abandonment, ridicule, and ignorance pushed upon those of us who have suffered from this disease. It is still a very open wound.
But, please don’t let that stop you from trying. You may not get the best response…..but don’t let that stop you from reaching out with love and support and changing the experience to be something good. It truly is never too late. And for those who are feeling the same as me….and asking, “Why now?” Try to step back from it for a minute….let go of the past…..and welcome the opportunity to share your experience with them now, as hard as that may be. Their true intentions will shine through in short order.
See, the way I see it, we are the blessed ones. We have a glimpse into reality and what this life is REALLY about. All that crap on the surface doesn’t mean squat! Doesn’t mean we’re better than anyone else….just lucky to have the opportunity to experience this depth of life and all of its emotions, good and bad. Shouldn’t we share that wisdom?
So to those who truly want to help…instead of posting meaningless replies and information….do the following:
1) Read my website and share it. Visit the links I provide to good Lyme sites and information. Educate yourself and everyone you know about the truth behind this disease. www.livinglyme.com
2) Watch this movie so you can REALLY understand what this disease does to many people.
Under Our Skin (free to view).
Write letters to your representatives and actively pursue ending the denial of treatment for Lyme patients in the name of politics and greed.
Donate to one of the causes on the page above.
BETTER YET! Find a Lyme patient who is struggling to pay for treatment, and help them pay for it. There are hundreds and thousands of people out there suffering with this disease needlessly and are denied treatment or can’t afford it. It’s not information that is hard to find.
Still, I doubt most people made it this far into this…..probably lost them at here’s what you can do….
Yet, I do not harbor hatred for anyone. I love all of my family and friends just the same…..whether they talk to me or not, I still love them. I hold no judgment. I understand the lemming mentality. We are all guilty of it in some way. Just do us all a favor. Don’t pretend to care IF you really don’t.
And if you do……then take the time to ACTUALLY learn about this disease and begin supporting those that are suffering as we speak.
“Silence is the Voice of Complicity” ~Emma Goldman
As the Winde blows….I will come again!