I come from a long line of burriers, stuffers, and bottlers. My family tends to hold grudges or avoids instead of talking and communicating. I know we are not the only family who operates this way. But because of this, it feels like people only want good news. If it isn’t good, please don’t share it
I had someone tell me “Stop with the Lyme stuff, no one wants to hear about it anymore.”
And so I started censoring my facebook. Now and then I post something, but I’ve allowed the “share only good news” rule take over. I think that is going to change.
Year of the Black Water Snake has the opportunity to be a very healing year, and I am going to drain this year’s healing energy for all it’s worth.
When I share what I write people tell me I sound resigned to death. That I’ve given up. I try to remember those are their fears, not my own. Yes, we are all dying, but no, I am not resigned to it. I have not given up. I apologize if what I write upsets people, but I cannot stop writing.
My outlook is different. When you are sick like I am, you have no choice but to change. Well, you do. You could allow yourself to go mad, but I’d rather keep the smidgen of sanity I still have ;)
So if I sound melodramatic, spouting utopian thoughts, "make love, not war, man!" kind of sentences, or “resignation to death” pieces… it is only because I know what is and is not important in life, and those reading who struggle with my words just are not at that space yet.
It is also my way of expressing things that I need to get out, things that should be shared because… if it helps even just one person, then my own suffering helped make a difference. Sometimes the things I share are painful, sometimes they are full of anger and grief for this illness, but those kinds of things are not meant to be kept inside. And again: I know I'm not alone in those things, but many are unable to express it, and so I hope my words help them find their own....
I’ll admit that I don’t do enough to share about my illness with my family. I need to be better with that.
No one really understands Lyme Disease unless you have it, or someone close to you has it. Unlike other diseases and illnesses, such as Cancer or Diabetes, Lyme disease is not that well known or talked about. There are no walks for it, no commercials, no highly advertised fund raising efforts, and your doctor doesn’t do Lyme Disease screening tests or questions each year.
Lyme Disease is this thing that only seems to come into one’s life through the back door: Only if someone you know has Lyme, do you learn a little more about the illness, but unless it’s you, a spouse, or child – you don’t really research or read about it on your own time. I’m the first in the family to be diagnosed with Chronic Lyme Disease… so this is new territory.
Sometimes I hear from my family or friends – they read an article or heard something on the news. And I’m happy about that, I’m glad they read the article or listened to the broadcast. At the same time I’m angry.Not at my family, but at the media, the IDSA, the CDC and our government.
I’m angry about the complete disregard of my illness. An illness that maybe gets a side note blip of a mention in medical school, but those med students will never be taught specifically about Lyme, so they will go on to be just as ignorant and disregarding of it as the last generation of doctors.
I’m angry that because of the lack of information, and the amount of misinformation that is out there, our society is ignorant about Lyme Disease. It’s the fastest spreading vector borne illness that’s been around since the late 1970s and yet most people have no idea what it is… and the mainstream knowledge that is available iswrong.
So when I try to talk to family and friends who are not my doctors or fellow Lyme patients, I feel like I have to go backward and explain everything before I can answer things like: Why is treatment taking so long? Why are you still sick? You don't look sick....
And when I do so, they get this glazed over confused look on their face like I’m trying to explain some complex math equation and I often wonder if they are really thinking about something else because they are bored, or if I’ve just totally lost them. Because by the time it’s over they are debating with me about how I should be tested for this or that because Lyme can’t possibly do this, or they just look at me like I’m some crazy Lyme Disease vigilante.
Usually after I tell them a few things, they simply say, “Well, good luck!” and change the subject or go talk to someone else. The whole “no bad news” thing. I get that no one wants to hear that I’m in pain all the time, I get it…
I have some family and friends who are actually in the medical field, and I struggle with how much to say when they are around. I’ve been to too many doctors who looked at me and flat out said, “Nothing is wrong with you. Why are you here?” to know that just me saying: Lyme Disease does THIS, and expecting them to not look at me like I have two heads, over exaggerating, or vying for attention is sometimes hoping for too much.
Please know I’m not upset with my family. I understand their lack of knowledge about Lyme, because up until I was diagnosed, I too had very little {completely wrong} information about this illness. I thought the same things most people think, which is why it never crossed my mind as a possibility.
I guess I just don’t want others in my life to continue to believe the misinformation. I want people to know the truth. I want them to understand what Lyme really does, to understand the true seriousness of this illness… to know how one little tick bite can cause so much destruction.
On a grander scale, I share this blog because I want Lyme Disease understood everywhere. I want people to be aware…
