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.
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.
I always find it minorly amusing when people express to me how happy they are for me that "all my dreams are coming true." I must have developed the art of appearing to be successful on social media the past few years because the truth is that I often find myself on my bedroom floor in tears because my life seems so drastically different than I imagined it to be in my younger years.
Dreams are funny things. Funny in that when I was younger I often thought I could make my dreams come true by wishing on a star, dropping a coin into a quaint little fountain, or blowing out birthday candles. The unlikelihood of dreams coming from those simple acts of belief are slim to none, and when I was diagnosed with Lyme disease I learned that hard lesson fairly quick.
Through the Lyme battle, I've been blessed to learn a few things that have shaped me into a completely different person. This odd transformation hit me not too long ago when I realized that I often don't recognize myself when I look in the mirror anymore. This fighter that was stripped of all of her dreams was once a young girl with her head in the clouds. And it turns out that this dreadful disease has compelled me to see life in a whole new way; a way that I never before would have thought possible. I've rolled this one over in my head multiple times in an attempt to discover whether or not that fact is a blessing or a curse.
It has been five years since I have felt like I have done anything worthwhile, and five years since I received my diagnosis and returned home from my first semester of college. I remember leaving before the semester ended, and feeling like a complete failure because my body could not physically handle being in college for one minute longer.
Since then I have spent lots of time doing things that always seemed useless and often ended in failure. For the first two years, I watched seasons of my favorite shows dozens of times over while I often felt like I was drowning in supplements and protocols, and yet saw no results as the pain relentlessly persisted. I went to three different colleges (and dropped all of them.) I picked up every hobby I could find and quit many of them after I realized that I couldn't keep my brain fog away enough to even finish what I started. I couldn't hold a job due to Lyme crippling my abilities. I planned a wedding; only to call it off and find myself right back where I started (single and still sick). And in my head, all of these failures made up the sum of me as I continuously was forced to fight Lyme every step of the way.
But I did something recently that made me realize that a person is not the sum of their failures. It is often when you stand back and look at your life as a whole that you realize that most of those seemingly big failures were stepping stones to successes, and Olympic moments weren't meant to occur every day.
I recently had the opportunity to participate in a vendor event where I was able to sell laser engraved products that I've been working hard to design and produce. Learning something new is always scary and can often seem like a large task when you begin to glare it in the face. I had many a moment where I was ready to give up. Moments when I butchered an entire basket of products while I was learning to use the laser (to which I now call the basket of misfit items!), moments when the wind and rain would destroy my entire display after I had just barely set it all up, and moments when I would spend the morning in discomfort and pain from Lyme, only to get up and buckle down for the busy evening and rush of busy customers. But despite it all, I persisted and pushed myself harder than my Lyme disease has ever allowed me to before.
Many may not realize this, but this vendor event was a huge victory in the life of Lymie like myself. I spent eight days on my feet and overworking my body in ways I haven't done in years. I spent eight days around huge crowds while my Lyme riddled nerves burned with anxiety. I spend eight days surrounded by food vendors that were a constant reminder to me that I don't eat what "normal" people eat because I'm sick. And I spent eight days smiling and rarely ever mentioning my illness because every time I mention Lyme to the average person, it is rarely graciously received.
My overall response to the crazy week I just lived is pure victory. Victory that I set a goal, saw it through to the end, and it was a success. Victory that people liked and bought a product that I made and that I just had a whole new start to a business that I'm hoping will grow and be a success. And victory in that I was able to interact with hundreds of random people and my nervous system was strong enough to hold its ground and not put me in a panic.
Although the experience was far from perfect, and there were days that I fought through pain and Lyme symptoms, I feel like I just broke through a massive wall in my Lyme journey. And that wall was the big fat lie that Lyme disease makes me a failure. Lyme disease in no way made this event easy as I found myself fighting symptoms all along the way (and now paying for the overworking of my body), but it made it worth it because that wall in now broken and never again will stand tall.
The fact of the matter is that I learned some things through this experience, and they're things I'll hold with me for life.
The first lesson being that people with chronic illness and disability can still do wonderful and amazing things. The fact that they fight through debilitating life challenges makes them all the more strong for being able to do all of the great things that they accomplish. A great victory for someone who is sick may seem minuscule to the average person, but when a child is learning how to walk we never complain and tell them how they should be talking by now. So when my biggest victory was managing the pain just enough that I could manage to take a shower by myself again, that was something to celebrate. And now my biggest victory is starting a small business that may go absolutely nowhere, but that isn't going to stop me from trying.
The second lesson learned came to me the last day of the event when I thought to myself how I wish I could go back to that sixteen-year-old girl who had dreams of being a vocal performance major, opening her own vocal studio, getting married and raising a family. I wish I could go back to that girl and tell her that all of those dreams were going to be utterly smashed to pieces by a disease that can manage to strip you of everything. But I also wish that I could go back and tell that girl that through all of the rubble and scattered pieces of her broken dreams, she would find beauty, peace, and great joy in her renewed view of life and the endless possibilities that it holds. Life is not easy. And it isn't supposed to be. For if life were consistently easy, we would miss out on some of our greatest victories.
My third and perhaps most important lesson I have learned from this experience is that it is the little things in life that bring us the greatest joy. Little things like laughing so hard your stomach hurts, and crying tears of joy for the first time in forever. Things like stopping to smell the flowers or walking barefoot in the grass. I often missed the little things in life that give depth and meaning, and I often gave too much of my attention to things in life that are artificial and temporary. For I have found that the only thing that can strip a person of their artificiality is great trial and affliction that burns the artificiality out of us and compels us to look a little deeper and take note of the little things that the average person misses. And although I sometimes question that deep sensitivity I've developed in the past five years, I am also deeply thankful for it, for I have come to see the world in a completely different manner than what I saw it before.
The reality of life is that the cure for broken dreams is to dream again and to dream deeper. And as you walk the painful path that's lined with seemingly shattered dreams, you will find new dreams among the rubble and the ashes, and I guarantee you that you may grasp some of your dreams past as well. Whatever you do, just don't step off the path no matter how painful it may be. Because walking the path of your broken dreams can lead to the most beautiful of destinations.
"What is Lyme Disease?"
I've come to know that the MOST common question that any Lymie receives is the aforementioned question above. I've found myself answering this question dozens of times, and I am quickly reminded how tragic the Lyme epidemic is due to the lack of information and education that the average person has on the topic. There is nothing "rare" about Lyme disease, as there are 27,000 new cases of Lyme disease in the United States every MONTH! And yet those who do not suffer from it often seem to turn a blind eye to it because the medical system has caused society to believe that it "doesn't exist." As a Lyme survivor myself, I can attest that it does exist, and it is one of the most challenging adversities that I believe a human being can suffer from.
So what is Lyme disease? Lyme disease is a bacterial infection that can spread to virtually any organ system in the body due to its spiral shape that easily can drill into any tissue, cell, muscle, or organ. Lyme disease and its co-infections can attack its victim and leave it completely paralyzed or in severe and unbearable pain for years, and Lyme disease is a constant battle to fight and the chances of beating it are slim to none. And yet there are thousands who fight every day, despite the harsh reality that is Lyme disease. Lyme disease is science, and yet it is so much more.
Lyme disease is pain. More pain than I ever believed a single human being could bear on their own until I was forced to bear it myself and watch many of my loved ones bear it as well. Lyme disease is loneliness, isolation, and insufferable boredom as you spend a lot of the time waiting for a treatment to work (or not work), waiting to feel better, waiting on doctors and support that never comes, and waiting to be well enough to be able to live life like anyone else. Lyme disease is blowing all your money on treatment that you don't even know will work, trying anything and everything to feel better, and crying in prayer during many dark nights because it's impossible to endure on your own. Lyme disease is hoping. Because sometimes when you've been stripped of everything, hope is the only thing you have left. And let's not forget that Lyme disease is resilience, patience, perseverance, and at times its just pure grit. Lyme leaks into everything, and it changed my life. And it is currently changing the lives of thousands and millions of others who are fighting the good fight every day of their lives.
Why is it important that we seek to crush Lyme? Because with so many suffering, we have to fight to crush the disease before it crushes us. And if we all ban together on this issue, we may find that doctors, friends, mothers, fathers, brothers, and sisters will start to listen to us. And once that happens we can change the world. We can offer more help and hope for the hands that hang down by the crushing the grip of Lyme.
So the next time you find yourself talking to a fellow Lymie, take time to LISTEN and offer love and compassion. That small act can truly be one big step into crushing Lyme disease and the stigma that comes with it. Lyme disease may try to crush us, but it never will because we do not intend to quit anytime soon.
This post was inspired by Splash of Lyme's "Crushing Lyme" campaign. You can follow this amazing Lyme warrior by following @splashoflyme on Instagram and checking out her amazing blog here. Thanks so much to Courtney for starting this and for sending love to all the Lymies this Lyme Disease Awareness month!
I wish I could tell you that it was going to be easy. I wish I could say that the road of Lyme disease was something that everyone understood and that there wouldn’t be moments of disappointment or despair along the way. I wish I could explain that there aren’t very many tears and that there is an absolute solution to it all. I wish I could express to you that it wasn’t as mindboggling and scary as it is.
The truth is that Lyme disease is one of the most difficult adversities that a human being could experience. Lyme is commonly all encompassing, meaning that it will impact every ounce of your life. And at some point, you’ll find that you’ve been changed forever and that there is no going back to the person you were before. The day will come that you’ll glance at yourself in the mirror and you won’t recognize yourself. That first day of sudden realization will be met with tears and grief, but with time will be transformed to acceptance, gratitude, and hope.
The reality of Lyme disease is that all of the pain and hardship may be strikingly real. However, I can promise you as well that the reality of Lyme disease can also have an elegant beauty about it that is found deep within the veins of your pain and struggle. A beauty that is born from your strength, resilience, courage, and determination to continue forward the best you can despite your difficulties.
There may be pain and tears of sorrow, but there will be days of relief and rejoicing of your victories. There may be anxiety and despair, but there will also be moments of peace and gratitude that runs deeper than it ever did before. There may be loneliness, but there will be a connection and love from God and others deeper than you have ever imagined. Furthermore there may be days where you feel unlovable and worthless, but your continuing faith and persistence will prove otherwise.
You see my friend, it may be piercingly difficult at times, but it is those difficulties that will shape you into the glorious person that you were destined to be. For progression, growth, and grace bloom out of the deepest adversities.
You are not alone. You are strong. You are loved. Don’t give up. You may have Lyme disease, but Lyme disease will never have you. Your body has the capacity to heal and there are resources and protocols out there that can and will heal you with patience and persistence. There is hope and healing ahead.
Stay strong my friend. For there are battalions of people and angels rooting for you and cheering you on in your journey of Lyme.
A Fellow Lymie
This post was inspired by Lyme Now who has kicked off Lyme awareness month by starting the #lettertoalymie series. You can check out their website and read a lot of other letters to Lymies by clicking here!
Okay, obviously this is a little exaggerated but how many of us in the chronic illness community often feel like an alien from outer space compared to everyone else who is healthy?
I often find that there are so many things I have to do to make it through the day that other people don't, and it often makes me feel isolated and weird. I take pills when I wake up, at breakfast, at lunch, at dinner, and before bed to manage my health so I can function. I have day time pajamas and nighttime pajamas for the days that I'm bedridden. And although I may not be on a gluten-free, dairy-free, sugar-free, paleo, keto, vegan diet.... I often find that what I choose to eat (or not eat) can often make me feel separate and different than everyone else even though I do it for my health.
My point in this truth is this: DIFFERENT is not bad. Literally, everyone has their own quirks and idiosyncrasies. Maybe I have more than the average person, but that doesn't make me less of a person or less capable of living a full life. If you spend your day on IV's, taking pills, sleeping, eating healthy, and lounging in pajamas because normal clothes either cause pain or severe itching IT'S OKAY! You're not "weird" because of these things. In fact, it is the depth of our differences and the strength behind the differences that give those in the chronic illness community great beauty and elegance in how they live their lives. It's important that we all strive to remember that and to increase love and understanding, and decrease false judgment and ridicule.
Comment below if you can relate and something that you do as a chronic illness warrior that makes you feel different!
One of the greatest frustrations of the chronic illness community is when people assume that you're "faking" your illness for attention. Let's be real here: There is no way that a community that takes up almost 50% of America is all faking it. You're right, I don't look sick! But that's mainly because I spent two years looking sick on a constant basis, and who wants to look sick all the time?
There is an immense amount of truth in the phrase "Fake it till' you make it." And for the most part, I have to try to live life to the fullest and have as much happiness as I can despite the chronic illness. That desire and constant striving doesn't downplay how much pain I've experienced, or the constant battle I fight just to be able to get up and going each day. Some days are better than others. Some days awful. And some days are just plain frustrating! But that doesn't mean I'm going to give up any time soon.
Everyone's chronic illness life looks a little different as we're all striving to reach a point where we don't have to fake it anymore. But in the meantime, we strive as hard as we can to continue forward (even if that means spending a day in bed). And that's what makes each and every chronic illness warrior strong and resilient. We don't quit even when we're in the middle of the fire and feeling like we're being burned alive. There is grace and resilience inside of every chronic illness warrior, and that is something that we all must be reminded of.
Comment below what "faking it" looks like for you and how you manage to live despite the illness!
How many of you feel like you spend half of your life explaining your illness to people who don't believe you?
Let's be real here, a lot of us have experienced reactions from people about our illnesses that often lead to negative thoughts about ourselves and our struggles. I've often found people making the above comment after I've already explained my illness to them multiple times. Either that or it's usually followed by silence, lack of knowing what to say, repeating the words: "I'm sorry" or the famous line of: "I can't even imagine!" While all of these are not necessarily offensive things to say, they can make someone who's already struggling enough often feel like they're just a massive burden or like they're just crazy.
If you respond with a statement about how you didn't know when I've already opened up to you about it, it tells me you weren't listening or you didn't believe me. If you respond with "I'm sorry" followed by silence I often feel guilty for talking about it at all because I was never seeking for sympathy.
So what is the chronic illness community looking for as a response? Well, first of all, I understand that nobody is truly going to understand what it's like unless they've been through it themselves. But you don't have to completely understand to offer love and compassion to someone who is suffering.
When I trust you enough to talk to you about it PLEASE LISTEN. Follow up "I'm sorry" with reminding me that I'm not alone, I'm loved, and I can do this. Offer words of encouragement and hope. I need somebody to fill my painful space with love and compassion, not rejection and astonishment. May we all try harder to respond to anyone's struggles with greater kindness and love.
Comment below if you relate how you would like others to respond when you open up about your illness!
I'll never forget when I was at my worst and I would start my morning off with a handful of supplements and oils! I used to joke with my family about how I couldn't possibly see how there was a need for breakfast after taking so many pills! I still take quite a few supplements, but nothing compared to the 20 different capsules I used to take three times a day!
I think when you're healthy and strong, it's common to take for granted so many things in life! Since I've been chronically ill I've realized there are so many little things I have to do every day to be able to function, and it blows my mind to think that I used to exist without supplements and essential oils when I was younger!
Being sick has definitely taught me not to take the little things for granted, because someday you may not have those things, or someday you may find that you have to add a lot of extra and difficult things to your routine in order to survive. The chronic illness community knows exactly what I'm talking about, and this is your friendly reminder to take time to take care of yourself every day. Because if you're chronically ill, self-care is crucial to survival. And if you're healthy, you won't realize just how crucial, until you're chronically ill!
Comment below if you relate to taking exorbitant amounts of pills, and comment other ways that you practice self-care!
It's very common for someone who suffers from neurological Lyme disease or any other chronic illness that affects the nervous system to experience intense anxiety. It doesn't matter if I'm falling down a stair or if I'm falling off a cliff, it all feels the same to my Lyme riddled nervous system!
I often feel like I experience and feel things much deeper than the average person and wonder if this deeper awareness of things is a blessing or a curse. I remember when I was at my worst, my heart constantly seems to be pounding out of my chest, and I often felt like I had little bugs crawling under my skin. This constant feeling of distant danger would follow me everywhere, and these feelings often made me feel completely incapable of finding peace. I still have times when I feel desperate for the relief, but I've now learned and continually practice coping mechanisms for this intense anxiety.
I find my head spinning often about how I'm supposed to feel or react despite the fact that I have this hypersensitivity to my surroundings. I'm supposed to be happy, but not get overly excited. Hopeful, but refrain from getting my hopes up. Grieve and process emotions, but not for too long or too deeply. These mixed messages of how I'm supposed to feel do not help with the healing process and doesn't promote self-love or self-care in the least.
I've found that it is possible to find peace in this illness by grounding myself and shutting some of the voices around me off. Peace comes to me through daily meditation, and connecting to the earth and to God. It may seem impossible to find peace in an overly anxious body, but it's possible as we take time every day to heal our bodies, minds, and hearts.
Comment below if your illness makes you feel hypersensitive, and how you find peace through it all!