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!
We live in the self-care revolution! Everywhere we turn there are posts on social media about self-care and self-love, and how to practice it in our everyday lives, and I for one believe that self-care is a crucial part of healing and coping with chronic illness.
We live in a world where self-care is often portrayed as things we do that make us feel good in the moment. And don't get me wrong here, I have definitely been found guilty of eating a piece of chocolate cake in the name of self-care! (As long as it's organic and sugar-free right?!) But I just wanted to point out here that self-care doesn't always look like things that feel good or are convenient in the moment. It's not always convenient to take all of my supplements or drink green juice every morning, but it's what my body needs to function and to stay well, and those simple things are sometimes the best ways that we can take care of ourselves. Self-care isn't always nice and pretty looking. Sometimes it's grueling when you're fighting a chronic illness, but we resolve to keep doing it because we're fighting for our quality of life.
I also think it's really important to find balance in caring for ourselves and caring for others. It's important that in our efforts to practice self-care we don't become self-ish. And in our efforts to care for others we don't forget to care for ourselves. Balance is one of the most important things we can find in our journey to health wellness and as we strive for that we can find joy in our journey, no matter our circumstance.
Comment below what self-care looks like for you!
We live in a revolutionary period of time where a lot of judgment is placed on how we look.
Looking "picture perfect" on Facebook and Instagram.
Looking like we don't have any struggles when we really do.
Looking the way that everyone expects us to look, even if it makes us feel unnecessary pressure and undue stress.
I have always been a strong believer of waking up in the morning and looking the way that I WANT to feel. Not the way that I actually feel. I've done this from my teenage years, into my adult years, and it has helped me to feel confident in my own skin until I realized that when you have a chronic illness, most people don't believe you unless you "look" sick. What does "sick" look like anyway?
The bottom line is this: Just because somebody looks like they have it all together, doesn't mean that they aren't having deep trials and tribulations of their own. I have spent EXORBITANT amounts of time looking "sick" because I didn't have a choice. But on the days that I do have a choice, I choose to look as strong and healthy as I can because it makes me feel better when I take care of myself. So... it's important that we always strive to be KIND. You never know the invisible battles that someone is fighting every day, and when it comes down to it, how we look on the outside is never as important as how we look on the inside.
God knows our hearts, and we can seek to know the hearts of others as well if we live our lives in LOVE instead of in LOOKS.
Comment below if anyone has ever said "well you don't LOOK sick!" to you and how it made you feel!
Obviously I can't just go around telling people they smell, so I felt this chronic truth was necessary! The main message I'd like to get across here is that chemical sensitivity is SO REAL and it affects a large amount of the chronic illness community!
Let's get down to the nitty-gritty facts: It's not your sweat that smells. It's the TOXINS in your sweat that causes body odor and therefore makes everybody feel the need to mask the smell with perfumes and colognes that are jam-packed with chemicals that are harmful to our hormones, our immune system, and our nervous system. (Plus, perfumes are packed with toxins. Which means in the long run, you'll smell worse.) It's not that I just think that everyone smells bad, it's that these chemicals often bring on a major headache or nausea that can be frustrating to deal with every time I go out in public.
So here's some easy tips and tricks for reducing our use of strong chemical perfumes!
1. DETOX! Detoxing can easily be accomplished through going for a morning jog and breaking a sweat, drinking celery juice, or eating a leafy green salad every day! The more you detox, the less your sweat will produce body odor, and chemical perfumes won't be necessary.
2. The next time you go to a place with a large crowd of people, don't apply any perfume or cologne! You never know who in that crowd of people has an invisible illness and will have to go home early because the air makes them sick.
3. Go natural! Essential oils make great perfumes, and I've found that scents like lavender, geranium, or grapefruit work great for women. And white fir and Hawaiian sandalwood are great scents for men!
We can work together as a society to make our air cleaner and healthier for everyone around us!
Comment below if you have chemical sensitivity and how it affects you!
Almost everyone I know who has a chronic illness has at one point or another been accused of looking for attention. I really think the only way that you can avoid being accused of attention seeking through your illness is if you never talk about your illness, EVER. For me, the problem is that it's not possible to never mention Lyme disease because it takes up such a large portion of my life! I talk about chronic illness the same way any other young person would talk about work or school, because it's such a part of me, and it's a full-time job to manage.
I can't help but laugh every time someone says that "I must love attention" because first of all, who in their right mind would love attention so much that they would make up a disease to get it? Second of all, most people don't even believe that Lyme disease is a real disease. So if I was really looking for attention, wouldn't I choose a method that is a little more effective? (P.S. I really don't like being the center of attention anyway.)
Here's the bottom line: I have been to places that a lot of people can't comprehend. I've experienced such darkness, pain, and isolation, that it grieves me to think that anybody else would have to suffer through this alone. For that reason, I choose to share my story and talk about what I've been through because greater love and understanding for this community of people could possibly change the world for the better. I've developed such a passion for raising awareness because NOBODY deserves to be alone in this fight. My illness has nothing to do with my desire (or lack of desire) for attention. It has everything to do with reaching for the hands that hand down in despair, and hoping that I can play a part in lifting them out of the darkness.
Comment below if you have ever been accused of attention seeking because of your illness, and why you choose to share your story!
I felt like this chronic illness truth was extremely necessary after the past month for me!
When you're in the fire at the moment, it's incredibly difficult to remember this and it's something that I think we all need to be reminded of. I often feel broken, exhausted, and worn down as I fight every day for my quality of life. It's easy to assume and wonder if I'm just weak and maybe I don't have what it takes to handle this trial. Lyme disease and other chronic illnesses DESTROY lives and it's our job to make sure that we don't let it, and that we continue to fight the good fight. That fight is a CONSTANT battle that can be overwhelming and intense.
I believe that it's so important to remember that as chronic illness warriors, we are living on levels of pain that the average person doesn't, and that is a massive victory for each of us. We are strong, beautiful, and capable people. Just because we have different challenges and disabilities, does not mean that we are useless or of no worth. Chronically ill people are some of the strongest and most beautiful people I know because we are laced with depth and drenched in compassion. We love deeply, and it takes everything we have to maintain faith and hope and yet we manage.
Each and every chronic illness warrior is a survivor and that is something to be astounded and amazed at. I for one am thankful for the strength that is demonstrated by those who are constantly in the fire but choose not to give up. No matter what anyone says, and no matter how anybody treats you differently because of your illness, always remember that YOU ARE A WARRIOR.
Comment below if you needed to be remined of this and if you've ever felt weak and useless because of your illness! Remember that you are not and you can do it!
The seemingly never-ending journey that every chronically ill person has to wade through. 🙅♀️🤷♀️
I've been fighting the Lyme battle for quite some time, which means that at some point I've tried almost every diet under the sun. Gluten-free, fat-free, dairy-free, vegetarian, vegan, paleo, keto, you name it... I've done it. It can take quite a while to find out what works best for you in the realm of food, and there are so many different nutrition theories that are constantly telling you what you should or shouldn't eat. I've learned that diet is different for everyone and that one man's food is another man's poison. For me, I eat organic, and I've completely cut refined sugars from my diet. And that's how I eat so I'm not sick on a constant basis!
I've discovered a weird social quirk through all this "dieting" business though, and that is that a lot of people often feel uncomfortable when you choose not to eat at any social event that involves food. I've often had people make comments about my weight or about how I can't just think I'm better than everyone else because I eat differently. Honestly, I do not think down on people for what they eat, and when I talk about my diet it's because I have a passion for health and wellness, and I'm seriously just trying to stay alive in my Lyme battle! 💪💚❤️😁
Comment down below what you eat to manage your illness, or if you have any funny stories about people jumping to conclusions about your diet! The more we share, the more we can care and understand where others are coming from!
The process of emotional detox that weighs in your stomach and makes your heart physically ache.
So often people who suffer from chronic illness are misperceived to be "negative" or "attention seeking" because of the grief that comes with the trial. The truth is that I generally consider myself to be a happy person, but I've lost SO MUCH in my time of illness. I've lost people I love, and I've lost some of my dreams and aspirations and my ability to achieve them. It's only NATURAL and HEALTHY to grieve. Grief just comes with the territory, and taking time to fully experience and feel those emotions is part of processing and coping with the pain.
The key that we all keep seeking for peace. The key is that we don't give up. In order to let go of the pain, we first have to allow ourselves to feel it. It's okay to take time to grieve and it's okay to not be okay. As we experience this form of pain we can come to a place where we can remember that there is hope and happiness ahead.
When you have a friend who is chronically ill, it's important to hold space for their grief with them. It's important that we don't constantly criticize because it seems like the negativity is frequent. It's important that we love those who are suffering so much that the love can heal the grief and we can be the happy and joyful people that we were meant to be.
Comment below if you experience grief with your illness and some of the things that help you through it!
Welcome to the beginning of Chronically Beautiful's "Chronic Illness Truth" series where we share bluntly honest truths with you about the reality of living with chronic illness! This series will serve two main purposes:
#1: The first purpose is to educate the healthy and help cultivate love, compassion, and understanding to the chronic illness community. The best way to help and serve others is by coming to an awareness of the suffering all around us, and the more knowledge we have, the greater our opportunities we'll have to help.
#2: The second purpose is to build the chronic illness community through sharing things that everyone can relate to so that nobody feels alone or forgotten in their chronic illness journey. Most of these truths that I post will be specific to Lyme disease, but I'm sure that almost anyone with any chronic illness can relate, and that will help us to make connections and form a greater community of support and understanding!
Chronic Truth #1:
It is very common for people to ask me what my illness is when they find out I have a chronic illness, and it's also very common for others to feel uncomfortable about asking. I just want to clarify that it's completely okay for anyone to ask about my illness. It doesn't make me uncomfortable, and I often enjoy the conversation that comes from that question.
One of the funniest things to me is when people mispronounce Lyme disease. Seriously, it's probably one of the easier illnesses to pronounce and yet so many people throw an S at the end of it! Go figure!
Believe it or not, I've actually had people ask me if my illness comes from limes, and it actually comes from a tick or any other biting insect that can carry the bacteria. It can also be passed down to your children, as is my case. My mom has had Lyme from a tick bite since she was nine, and therefore I was born with it.
It never ceases to amaze me how strong anyone with a chronic illness is. I've spent many a morning wondering how on earth I'm still alive after the night before, and yet I'm still here and I'm still kicking! I've seen this phenomenon among many chronically ill people. We truly are WARRIORS who fight long and hard for our lives, and as we do so we often feel worn down and exhausted from fighting the fight. Nevertheless, we value life, and we continue to fight in hopes that we can be healed and then help others on their healing journey.
Comment below if you've ever had someone mispronounce your illness, or if you're completely amazed at how you're still alive! And stay tuned for more of our Chronic Illness Truth series!