Chronic Illness Truth #17
We live in a world of LABELS! We label EVERYTHING based on what we can see on the surface, and the reality is that the true depth of most people is found in their heart, which is something that takes time to see.
I've recently been having a difficult time navigating talking about (or not talking about) Lyme with healthy people. I've had so many experiences where it seems like the second I mention Lyme in a friendship or relationship, then the massive brick wall of Lyme disease is now placed between me and that person. This phenomenon of a Lymie's social life can often leave those of us who are suffering feeling alone and misunderstood.
While it's true that Lyme disease plays a huge role in my life and has sculpted me into the person that I am today, I promise that I live for more than just dozens of pills, treatment protocols, and eating organic. I'm not just the "sick girl" that needs help. I'm a girl that loves writing and singing. I'm a girl with the big heart that laughs a lot and has this deep need inside her to help those who are suffering. I'm the girl who's been beaten and broken down by the storms of life, but is in every way healing and striving every day to keep a smile on her face (even if some days I totally fail at it.)
The truth is that I will proudly wear the title of "Lymie" on my sleeve, but that doesn't mean that I'm not still 100% Claire. There is so much more to people who suffer from chronic illness and disability. You simply have to give them a chance. You are not the sum of your trauma, and you are not your illness. Most of the souls inside of these broken-down bodies are absolutely beautiful, and we must remember that as we interact with those who have walked different paths and traveled difficult roads.
Comment below if you can relate to having a hard time getting through the "chronic illness wall" with people, and what you do to remedy the negative labels that people can place on the chronically ill!
Dear New York Times
Dear New York Times,
It pains me to know that journalism has diminished to the point where fact and fiction are so tightly entwined that the people can no longer decipher truth from error.
I recently read your article entitled "Me Son Got Lyme Disease. He's Totally Fine" by Apoorva Mandavilli which stated many falsehoods about a disease that plagues thousands of people and destroys hundreds of lives to which everyone seems to turn a blind eye too. While I am so happy for this family and that her son found an easy solution, this is not the case for hundreds and thousands of Lyme families all over the world. It seems to me that while people are slowly being tortured to death, everyone else seems to be running around screaming that "it's not a big deal," and that is a tragedy that needs to be reevaluated at it's finest.
But at this time I won't speak for the hundreds and thousands, I'll speak for myself. Because coming from the girl who came home from high school every day to her mother in seizures and screams due to insufferable pain, and then found herself in that place just a couple of years later, Lyme disease is nothing to downplay, and nothing to claim that we're all crying wolf when the wolf in this story is 100% real.
Late-stage neurological Lyme disease destroys lives, disables bodies, kills people, and is one of the most painful and complex diseases that a human being could be forced to experience. I wouldn't wish Lyme disease on my worse enemy because when I was eighteen, my world stopped in a black hole of pain and agony, while everyone else's world seemed to keep going.
Sauna Detox Protocols
Endless Pills and Supplements
Lyme disease is far from "easily treatable" and seemingly impossible to cure as seven years later, although we've seen improvements, our battle with Lyme is far from over. For without constant vigilance, Lyme returns and it returns with a vengeance.
I was diagnosed with Lyme. My blood test came back positive. Lyme disease is real. And to silence a community of people who have worked so desperately to be heard so that others do not have to suffer the same battle alone is not something that is ever okay. We will not be silenced, because the silence that is forced upon the Lyme community every day is insufferably loud. Because if you actually had to hear it, it would break your heart.
Lyme disease can be a debilitating chronic illness, just like it is for me. In the case of chronic Lyme, there is no room for fiction, because these are the facts.
You can write your own letter using the #NYTIMESTHISISLYME to spread real awareness for this disease, and you can read the original New York times article here.
Chronic Illness Truth #16
I'm a young single adult and I should be having the time of my life, right!? Not exactly...
I always find myself at a loss for words whenever someone asks me what I've been doing "for fun" lately! Not that juice cleansing, resting a lot, and Lyme treatment isn't fun or anything, but I'm pretty sure that's not the answer that most people are looking for.
The reality of chronic illness is that a lot of those who suffer in this manner do not have the energy or stamina to go out and have the kind of "fun" that everyone else is having. The reality is that a lot of us are homebound and we've spent countless time coming to terms with the fact that having fun simply means not being in pain for a day, or even for a minute or an hour. Lyme disease has often had its way of making me feel like "the flaky friend" or the "friend who never wants to go out." Almost every chronic illness warrior shares the same story which results in dozens of friendships lost and insufferable loneliness because so many refuse to just love a person in pain and stillness.
Let me get to the main point here: It's easy to be the "fair-weather friend." It's easy to stick around when things are good. It's easy to artificially love someone who always seems to be in the middle of an "epic adventure." But in life, there will ALWAYS be fire. And when that fire comes, those friends who only want you around without your burns and scars are really not your friends at all.
So here's a friendly tip to all my healthy friends: When you have a friend who is suffering from the heat of chronic illness, the BEST thing you can do for them is to sit with them in that painful space and JUST BE THERE. LISTEN. And offer LOVE and SUPPORT. You may not always be able to douse the flames of their life fire, but you can always help them bear the burden so they are not left to do it alone.
I am always amazed at the level of compassion that chronic illness warriors have for those who suffer because they've felt the burn themselves. May we all strive to have that deep compassion and love for the sick and afflicted.
Comment below if you've experienced the loss of friendships because of your illness and what you need when you're in YOUR life fire.