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!
It's no secret that the community of people who suffer from chronic illness and disability is in an uproar due to the rash and erroneous statements made by Dr. Phil on Tuesday, March 12. In this episode, Dr. Phil claimed that "100 out of 100 relationships that involve care-giving fail. You can be a caregiver or a lover but you can't be both." I've never seen a more beautiful response than from the #100outof100 that's trending on Facebook and Instagram, and as a young, single, chronically ill woman myself, it may seem that I'm not qualified to have any opinion on this topic at all. But, I'd like to offer a fresh perspective to the community and to overall society. Everyone may be appalled by Dr. Phil's statement, but how often does society and communities all over the U.S. actually treat the chronically ill and disabled this way? Thank you, Dr. Phil, for saying out loud what most people think, but would never make audible. Your statement is currently bringing to light the attitudes of many and states that this is a social and cultural mindset that needs to change. Well, this is my perspective, and if you read all the way to the end, you'll find that I may be more qualified to discuss this topic than some might think.
My parents were married in the year 1980, and my mother was diagnosed with chronic Lyme disease in the year 2013. It took years for my mother to receive a diagnosis, which means that there were 33 years of unresolved health problems and 39 years total of disability and struggle.
On my parent's wedding day, my mother was eminently sick, and that was merely a taste of the next 39 years for them. I don't ever remember a time when my mother wasn't sick. My mother is the best mother I could have ever been sent to because despite chronic weakness, fatigue, and unexplained neurological symptoms, she successfully raised six kids in a happy and healthy home who are now thriving adults in society. It wasn't until I came along that symptoms became less tolerable and more abundant with time. As a teenager, I remember my mother often being bedridden throughout the winter months and hospitalized frequently. It didn't make it any easier that my parents had me, who seemed to always be sick with strange and unexplained symptoms, and the frequent doctors appointments for both of us almost never left us with any answers or hope to someday receive answers.
It wasn't until I was a junior in high school that my mom went down for the long run. Her pain levels were excruciating, she would often suffer from spontaneous seizures due to the high levels of physical pain, and she experienced pain so deep and severe that I often wondered what happened to my mom because she wasn't the same person when she was this ill. She was bedridden for years, she lost her ability to walk and was in a wheelchair for awhile, and again... there were no doctors that had any answers to give us other than that there is no illness with all of her symptoms.
Right when life reached it's peak of pain and discouragement, right when most people would leave and surrender to it all, right in the middle of no improvement, and right when a large majority of people would leave... my dad chose to stay. There wasn't a life to be had. There wasn't a possibility of going to work, or church, or anything else that an average man would do because when mom went down, my dad took his rightful position as husband AND full time caretaker. The position he promised he would take the day that he married her.
I've watched my dad care for and love my mother through this awful disease for years, and he isn't planning on stopping anytime soon. I've watched him feed her, push her wheelchair, and peel her off the floor after she's passed out or after a seizure. I've watched him drive when she lost her ability to. I've watched him take over the cooking and cleaning when she lost her strength to do it herself. I've watched him do what any real man would do when the love of his life is put in a situation like this. Because why would you trust a stranger that you pay for to take care of the person that you love and cherish more than anything in the entire world?
True love has absolutely nothing to do with physical ability or lack there of. True love has everything to do with two hearts and souls that would give and sacrifice ANYTHING for the well being of the other person. And if both people in the relationship have that mindset, then both people are thoroughly taken care of. My mother has always been a help-meet to my father. And when she was able, she was always by his side, helping and supporting him in all of his endeavors. My parents set out to be a team from the very beginning, so when they were brought to a point where they had to walk through the fire, they walked through it together without being burned alive.
Not only did my father have the task of taking care of a sick wife, but he also is frequently met with the task of taking care of a sick daughter as well. My small family of three pulls together in our house, and through sweat and tears, we take care of each other, no matter how difficult it gets. Often through the fire of chronic illness, I've so frequently been shut down by others, which is why it's crucial to have a family that is your full-time caretaker.
We live in a society where the breakdown of the family is dominating and the definition of love is becoming increasingly shallow. As a young single person, I watch many healthy young people searching for someone who can be their eternal companion, and basing their decision on how much fun they can have with a person, and how pretty looking they can appear to be together. Why would you need to take care of the person you love when you have doctors, therapists, physiologists, bishops, and pastors doing it for you? Wouldn't it be easier to hire somebody who is a qualified "expert" because they learned about it in a textbook once when they were in college?
The answer is no because true love has nothing to do with how good you can look on Facebook, and often the experiences that cultivate the greatest love are not shared on social media. Often the experiences that cultivate the most love are dark, scary, and require sacrifice. Cultivation of love is often brought on by those experiences that open your eyes to how much you would miss that person if you lost them.
I'll never forget the comments I've received from people towards the men I've dated about how wonderful a man he must be because he's willing to be with "someone like me." I often wonder if the person that told me that "it makes sense why no one would want to be with me" is right in some ways. And I often think of the many men that frustratingly have asked me what it would take to be with me because they don't think they could do it.
What all these people are forgetting is that love is patient and kind. Love is not skin deep but is something that penetrates into the heart and soul of two people who would give anything to be together. What happens when that "perfect" husband or wife becomes paraplegic, or chronically ill? Has our society come so far as to say they won't love another human soul unless there's a guarantee that everything will stay easy and comfortable all the time? Because if we've come that far, then society is seriously disintegrating before our eyes. No wonder there are so many incredible disabled women I know that feel like they're destined to be alone.
As a chronically ill single girl, I know my worth. I know my mind and heart have more to give than a lot of people who are physically able and strong! And I know that there are thousands and millions of chronically ill people out there who are worthy of love because the love that they have to give is the kind of love that lasts into the eternities.
When something is broken, you fix it. You don't throw it away. When you choose to love someone who is broken, the brokenness heals. Because doctors and "experts" cannot heal you. But love can. It is possible to love at maximum capacity while coping with disability and illness. May we all choose to see that in whomever it is that we come to love someday.
I literally just had a conversation with my brother that sounded just like this! I was chatting with him on a day that I didn't feel well at all, and he was telling me about how sore he was because he was playing basketball the night before, so I thought I'd be clever and respond with that! It gave us both a good laugh!
Anyone who struggles with chronic illness knows that existing in a broken down body can often be discouraging and make you seem obviously separate from everyone else. What inflicts a minor amount of pain on the average person often leaves me bedridden for a few days, as is with the rest of the chronic illness community. It's important to be sensitive and compassionate towards others no matter what, simply because you never know the inner batter that someone else is fighting.
I also want to point out that I often see a lot of posts on social media about longing to be like everyone else and have your life back again. The reality is that even when you are healed from this plague that is chronic illness, your life will not look the same as it did before you had the chance to experience the depths of this kind of pain. You'll be a different person who has grown and changed, and it's a beautiful change, not a bad one.
So it's okay to be different. It's okay to sit down in situations where someone who was healthy wouldn't. It's okay to say no to certain foods at social gatherings because you know they'll make you sick. It's okay to have bad days, and it's okay to be different than the rest of society. Being unique doesn't make you weird. It makes you absolutely beautiful! And that beauty is something that will penetrate into the hearts and minds of the right people with time. So live life to YOUR fullest, not everyone else's. And embrace being a little bit different. Because normal has always seemed awful boring to me anyway!
Comment below if you agree and how your illness makes you feel different but beautiful!
Disclaimer: The information provided is for educational and informational purposes only, and is made available to you as self-help tools for your own use. This is my personal experience, and I do not claim to be a doctor or any other medical professional and this article should not be used as a replacement for professional medical advice. All and any information given is for the purpose of sharing information to help you help yourself, and not for me to take on any other role as any health professional.
I've rolled these thoughts and experiences over in my head hundreds of times in an attempt to put words to such an experience. I've pinched and prodded those memories in the back of my heart and mind that I've tried so desperately to forget in the passing of time. And yet I can't manage to put words to it. There are no words for such pain. There are no words that could manage to make anyone who hasn't been through it themselves to quite understand the depths of the pain, and how it's left scars that I work so hard to heal on a daily basis. My story seems to become slightly more dark and scary when you reach into the bits and pieces of my illness that are endometriosis, and I've never managed to put more than a sentence or two to it before the topic is quickly changed or an instant assumption is made. I suppose the reason why I write this today is because it's time for those moments of awkward silence and assumption to stop... because any kind of chronic illness that destroys lives is something that should be talked about.
Everybody needs a safe space to talk about their life's anguish... and it's okay to be that safe space for someone. The more you know about these things, the more you'll be able to provide that safe space that somebody so desperately needs.
I've shared my Lyme story hundreds of times. I experienced strange and unexplained symptoms my whole life. I spend two years of high school worrying about my sick mother who has Lyme. I went to college, was diagnosed with Lyme myself, crashed, came home, and began my seemingly endless road to healing. Simple enough right? I had all the usual Lyme symptoms. I felt like I couldn't function. It was really hard. But the one thing I've never talked about is the endometriosis symptoms, and how those days and nights are the days and nights that haunt me the most.
"It's just cramps. All girls have cramps."
"Are you on your period again?"
"You went home from school for that?"
"Let's be honest Claire, you're not the greatest at handling pain."
All these comments were thrown at me so many times in high school and that I often felt embarrassed and ashamed for existing in a female body. If this piercing pain that brought me to my knees in tears and sent me home from school was so normal for so many women, then how come I never saw other girls on the floor gasping for air because of its excruciating nature? How come other girls didn't stay home every month? How come I was the one girl in the world that had pain that was THIS BAD? I couldn't understand how this was normal or how anyone could live with it. And I often felt confused when all doctors could tell me was that I was young and that it would even out. It never did.
"What does your pain feel like?" is the most common question that I receive, and I think it's about time that somebody finally put words to this kind of pain:
It's like someone is squeezing one of your organs as hard as they possibly can, only to slightly release their grip and then repeat the process over again.
It's like knives being pierced in and out in multiple waves.
It's like someone taking sandpaper to your lower abdomen.
It feels like something is trying to pull your hips out of socket and like your legs are going to give way at any moment.
It's like being in full blown labor for three to five days, every month, for the rest of your life.
Don't believe me? Spend one month in my body and you will.
The first time I experienced pain so excruciating that it caused me to have a seizure was one of the most frightening days of my life. It was as if I could feel my body deciding to check out from this dreadful existence, but not enough to kill me. I spent seemingly endless amounts of time on my bathroom floor with my head over the toilet because when your body is in that much pain, you can't manage to keep anything down. The nightmare just continued as I found myself in a position where I couldn't walk across a room by myself, but simultaneously I couldn't lay in a bed and wait for the pain to gradually increase anymore. I remember my dad would help me walk around the house through these flares because walking was slightly less painful than laying down which placed all the pressure where the pain was. There were so many nights that I prayed for the sweet release of death, and I often wondered if I was destined to do this for the rest of my life. I remember screaming to just rip it all out and make it stop and I often felt like I just couldn't do it anymore. I would beg every month... "Please... not another month of this..."
What I Didn't Know vs. What I Know Now
I didn't know that people actually lived like this. My lack of awareness for how dark and frightening life could be is astonishing. I didn't know that I'd ever heat bath water so hot that it burned because I was so desperate for pain relief, and I never knew that all the medications that doctors prescribed wouldn't work, and I never knew that this existence was something that one in every ten women experience on a constant basis. Pain changes you, and it changed me with every flare, every month, every day as I fought to remain sane through it all. I didn't even know that PTSD could come from physical pain, but now I find myself trapped in flashbacks every month, wondering if one day that level of excruciating pain will come back.
I didn't know that doctors would treat me so badly as if it were all in my head. I chose to go natural. I chose to say no to medications, birth control, and painful surgeries that are no guaranteed cure. Why would anyone want to listen to any medical professional that treats you as if your pain is all physiological and that ibuprofen and an anti-depressant will solve it? I didn't have the option of medications because I found that the more medications I took, the more Lyme symptoms would appear. Why would I trade one symptom for another that is equally as painful? Why did this road seem like this endless pit of options without answers?
What I didn't know then was that endometriosis and Lyme disease have a direct correlation. One can feed the other, and my endo battle had everything to do with my Lyme battle. Once I learned that truth, a wealth of knowledge seemed to pour down on my family as we learned a multitude of facts about Lyme and endo.
We learned that Lyme disease feeds parasites in your system (including in your uterus and ovaries), and those parasites and bacteria in your uterus can then cause endometrium growth, lesions, heavy bleeding, and insanely painful menstrual cycles. We learned how hormones play into illnesses like this, and how balancing the hormones can help balance the body, which will then reduce pain. And we learned that removing your uterus or painful excision surgeries can cause major damage to your immune system and the rest of your body. And with that knowledge, I figured that if I can get rid of the Lyme, I can get rid of the endo. I didn't know at the time exactly what that meant, but I did know that I had to try everything in my power to retrieve my quality of life back, and if that meant doing every "crazy" natural protocol out there, it was worth it if I could keep my uterus.
And so I proceeded with as much courage and strength that I could muster, and after years of constant struggle and perseverance, I am where I am at now.
Where I'm at in the Endo Battle Now
I believe that we live in a society that promotes instantaneous solutions. Instant gratification, instant entertainment, instant relief from discomfort, and instant healing. That's a nice thought, but life is not always meant to be instant and easy, and it was and is far from easy for me, but I know that I'm doing the right thing. I spent years gritting my teeth through the pain, and hoping that something we were doing was working. I spent so many dark nights wondering if I should just give in and take it all out. I ran images in my head of downing an entire bottle of pain pills because I was desperate for relief. I spent nights in tears thinking that my dream of having children would never come to be, and I now spend many a day in tears because the memory of those excruciating days and nights haunts me.
With all that said, the battle has been completely worth it. Currently, my pain is still there, and it's still difficult, discouraging, and arduous at times. My life still revolves around the menstrual cycle and I often find myself having to reschedule plans, or not make them at all because I know that an endo flare is coming. One of the most difficult parts of it all is having to explain to people how I know when a flare is coming, and then watch the frequent blank stares and speechless mannerisms. There are still difficulties, but the differences are miraculous and I find myself filled with gratitude for the immense progress.
I no longer have seizures and I no longer find myself in pain that is so severe that it brings me to my knees in screams. I no longer spend three days out of every month throwing up. I no longer question if I'm finding the right protocols because I can feel them working inside me for the better. My healing may not be instant, but it is effective. And along the way, my pain is necessary because the things that God teaches me through all this pain often leaves me in awe.
The reality is that God is greater than all of this. He's greater than any pain, heartbreak, or agony. He's greater than the devastating plague of Lyme disease. And when I find myself forgetting His greatness and love for His children, I grasp onto the fact that He's brought me this far... and He will not forsake me now. There are trials in life that are beasts, but God can and will bless us to stand still in His miracles and glory, and in turn, we will find ourselves experiencing miracles of healing and hope in places we never thought possible.
There may be no words for the full extent of pain and suffering from endometriosis and Lyme disease, but my attempted words will rest here in hope to bring light and hope to the woman on her bathroom floor screaming, because you're not crazy, and it's very real, and through it all, you are never alone.
This is the biggest joke my family spills all the time! You have to realize that I live in a household of Lyme people, and conversations often go something like this:
Person 1: "How are you feeling?"
Person 2: "Like I'm dying!"
Person 3: "I don't think the phrase "live like you're dying" was ever meant to be taken this seriously!
It may be the lamest joke ever, but it keeps us laughing and realizing that there's always something to laugh about, and some good to see in every situation, even if the thought of any good in pain at this substantial of an amount seems insane.
The reality of this is that whether it feels like we're dying or not, it's important that we strive to live life to the fullest. I abhor some days. I can't stand the pain and I want to give up on days that I hate, but I have to remember that there is a reason for all this and that I just have to keep inching forward and putting one foot in front of the other. Every effort we make through this journey is counted in the Heavens, and life can still have great value through these great depths that we're experiencing.
Comment below if this gave you a good laugh and how you live life to the fullest, even with chronic illness!