Disabled Life, Abled Love
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.
Chronic Illness Truth #10
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!
When Endometriosis & Lyme Collide
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.
Chronic Illness Truth #9
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!
Chronic Illness Truth #8
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!
Chronic Illness Truth #7
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!
Chronic Illness Truth #6
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!