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Every time I see this meme floating around the chronic illness community on social media I can't help but laugh out loud, mainly because it's so true that it's funny!
This Chronic Illness Truth applies to anyone who has a chronic illness that affects their joints, or even just anyone who is home-bound because of their illness. I really want to focus on the aspect of being homebound for a minute here... I am a young, single adult that lives with my parents and I live in a household of all sick people. My parents and I have chronic Lyme disease, and we survive this illness by working together and yes, we spend a lot of time at home because we're too sick to go out, or if we do go out we pay for it later. With this situation of mine, I always find it very frustrating to receive comments from people about how "I don't put myself out their enough," or "I just need to get out more!" This truth is important in order to demolish the stigma. I am not a recluse that doesn't get out enough. Those who have chronic illness are sick to the point where there are days when leaving the house is unhealthy for us. Those of us who are home-bound are often in pain and managing to the best of our ability, and if you do happen to see us out we're either having a good day, or pushing through pain, or both! So my message today is to REMEMBER. Remember to call the friend you haven't talked to in a while. Remember to invite us even if we can't make it. Remember to be present in our lives just like you would any other friend. It may difficult for us to navigate this illness, but we still intend to live a full life and we still need love, just like everyone else. If you're home-bound because of chronic illness... you are still of great worth. Never forget that. Comment below if you relate!
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I grew up on Hallmark movies. We all the type... Those movies that always begin with a single, independent, seemingly flawless woman with some high-end job in the city, or some cozy gift shop or bakery in a small town. And after a short intro of this stunningly beautiful girl, we're then introduced to Mr. charming, handsome, CEO, or buff small-town handyman who only wears plaid and manages three small businesses of his own. Along the way Mr. Charming meets Ms. Independent and in less than a day this unlikely couple can manage to save a town... or their small business... or Christmas; all while simultaneously falling in love, finding some reason why they'll never work out, separating for a few minutes, and then later (in the same day I might add) manage to resolve everything. Furthermore, we all know that every Hallmark movie ends with the world's most romantic kiss. And at the end of every Hallmark movie, we all assume the success of that perfect couple. I suppose that somewhere in my adolescent heart I believed that such perfection could exist. As I grew older I subconsciously held my expectations high and my hopes even higher that someday my Hallmark life story would become a reality. Let's just say I put the word "hopeless" in the term "hopeless romantic." I aimed high and hard for that reality. My perfect reality. My perfect lie. I'm sure you can imagine my shock when life didn't turn out the way I thought it would. Now, don't get me wrong; for I do not solely blame Hallmark movies for cultivating my perfect lie. I have found society, social media, social norms, and the status quo nurturing this perfect lie more often than not. I've watched young people my age post fundamentally every Olympic moment they experience in their short lives to their various social media accounts; leaving others relentlessly comparing their personal worsts to everyone else's public bests. I've observed pictures of endless glamorous and fun first dates. I've scrolled through perfectly edited engagement pictures in perfectly white fields or stunningly flawless mountain ranges. I've clicked on flashy engagement rings and completely enchanting wedding videos. I've liked and commented on many college degrees, job promotions, immaculate maternity photo-shoots, and perfectly clean pressed children. I've seen it all and aimed for it all, only to find that it is not all real. The problem with this subconscious facade is that it manifested in my very conscious life. I spent my days making never-ending lists of qualities in a "perfect man", only to find that there isn't a man that will check everything off on my list, and the most important things in a man weren't even on that list! I went to college because that's what you're supposed to do when you're young and fresh out of high school, only to find that college wasn't for me and that didn't in any way make me a failure. I've been obsessed with lists, schedules, planning, and my idea of perfect only to find that sometimes the lists and the schedules are significantly less important than God's timing, and that life is what happens AFTER you make plans! My reality was that I flirted with perfection because I thought it looked pretty, and the ugly in life scared me. I learned very quickly that the easiest way to overcome your fear of the ugly is to face the ugly head on and trust that God will lead you through the painfully imperfect moments in life. I found myself sitting in a dentist chair the other day conversing with the dental assistant who was cleaning my teeth. She asked me a few things about my life in which I shared with her about my blog, the gift shop I'm opening, etc. I mentioned a few small things about my life that I currently feel good about to which she replied: "Wow! It's like your life came straight out of a Hallmark movie! You inspire me!" To be honest, I'm still minorly laughing at that statement because oftentimes there are a lot of things that go unseen in other people's lives. It's natural to miss the sweat and tears that go into starting a business. Many people do not comprehend the long nights and overly stressful days that accompany earning a college degree. There's a lot of hard work and effort that is often overlooked among young people who can only see the outward "perfect relationship." Most people don't see that I have a debilitating chronic illness that adds extra weight and struggle to my daily life. Most people don't witness that agony of betrayal or abuse. The agonizing pain of many things that often feel like more than we can handle is often not talked about or recognized. This then leaves a lot of us wondering what we're doing wrong and why the long hard journey is something that must be borne alone. And then for those who are at high peaks in their lives it leaves them blind to the suffering around them and unknowing how to help, or unaware that it's even necessary for them to help at all! My life is far from perfect and that's okay! I've lived my fleeting moments of perfection. I've been the young girl at college with the world at her fingertips. I've fallen in love at Christmas and have pranced around with a flashy diamond ring. I've had perfect mistletoe kisses and perfect family photos. I've picked out the perfect wedding dress and posted perfect engagement photos to my social media. But there are shadows in every picture and wounds that go unseen. I also went home from college due to chronic Lyme disease and have spent years suffering and praying for relief and healing. I've passed through "a boyfriend for Christmas" only to be met with a breakup in June. That perfect mistletoe kiss only lasted for a second, and that flashy engagement ring meant nothing when glaring straight into the face of dishonesty and betrayal. Those perfect engagement pictures never lead to a wedding, and those family photos were originally meant to be wedding photos and are missing a few members of my family. And all of these imperfect things were things that were and are out of my control simply because they are a result of mortality. So, life is far from perfect... where's the hope in knowing this?
The hope is in knowing that the value of your life is not calculated by the sum of your perfect moments or the moments that everyone sees on social media. Life is not about the flawless moments that take your breathe away. Sometimes it's about the moments where your heart feels like it can no longer beat because your grief is too great to bear. Occasionally it's about sudden rainbows in the sky or dancing in the rain. More often then not it's about the moments in tears on the bathroom floor because we've all be there at one point or another. Sometimes it's about laughing so hard your stomach hurts. Often it's about embracing through the hard and wiping tears through the sorrow. It's about long nights and headaches. Intermittently it's about the first good night's sleep you've had in forever. Frequently it's about worrying and praying for a good outcome. Sometimes it's about problem-solving, and hand-holding, and enduring, and pouring your heart out to God in prayer. You see... life is the sum of all human experience because without the pain, sorrow, and imperfection, we would have virtually no recollection or appreciation for the joy, love, and beauty that comes in life. The most beautiful moments in life, are the moments that are borne out of great suffering. They come in the form of sudden beautiful vistas, sudden miracles, and moments of peace, hope, and unexpected smiles. Without opening up about the ugly imperfect moments of life, there are no hands to hold when you are called to pass through your life's ugly. So instead of hiding in secret, may we all be safe spaces for people to share their imperfection. Because becoming perfected for the eternities is all about striving to overcome the imperfect in mortality, and thanking God for the beautiful journey that life is. "Anyone who imagines that bliss is normal is going to waste a lot of time running around shouting that he’s been robbed. Most putts don’t drop. Most beef is tough. Most children grow up to be just people. Most successful marriages require a high degree of mutual toleration. Most jobs are more often dull than otherwise. Life is like an old-time rail journey–delays, sidetracks, smoke, dust, cinders, and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride." (President Gordon B. Hinckley, Ensign, Nov. 1984:86 ) We have Christ to heal us from the imperfect of mortality. And we have each other to aid in the healing process if we so choose to lift each other in love and support. May we all share our imperfect. Because at the end of the day... all of the outward perfection is just a lie anyway. Okay, I realize that we haven't had Thanksgiving yet... and it may be a pinch too early for Christmas posts... but I've been thinking about Christmas since June so I'd say it's time!
I've always thought that there was something so enchanting about making wishes. And although I've never been one to think that success or happiness comes from a mere wish... that has never stopped me from wishing on a star, or tossing a coin into a well. Birthday wishes always make me smile, and Christmas wish lists always seem to grow in my head this time of year. But the funny thing is the transformation that has taken place within my wishes as I grow older. As a child, my Christmas wish always seemed to be for the newest Barbie or the latest pair of shoes. As I got older, I always wished for a "boyfriend for Christmas" or "my one true love." And now my wishes always seem to be for less tangible things: things that are obtained through heart and hope. And although Santa may not be able to bring me a cure for Lyme disease (anymore than he can stuff a good man in my stocking...) I do know that Christmas is a time for miracles, and God has blessed me with many a miracle not only around Christmas time but all year long. So to those who are wishing and hoping for healing this time of year: remember that healing comes one step at a time in the simple precious miracles that can be so easily missed until we take the time to look back and see what was happening all along. Healing, hope, peace, and joy are things that God intends for all of us to experience as we press forward with faith. Christmas can be a difficult time for those of us that have been stripped of many things through trial and trauma, but this year I pray that your heart will be full and your body will be at peace as it continues on it's healing path. May we all hold on to our hope and experience pure joy as we enter into the Christmas season. I once used to be a young girl that found every detail in life to be absolutely magical. I used to record every moment that seemed completely enchanting on little strips of paper, and I'd fold them up and put them in a small jar that I kept on my dresser. And as I now look back on those moments that I never would have recalled otherwise, I'm reminded that every one of those moments was perfectly ordinary, but my mind recorded them as memories that were special. I've jumped in huge piles of golden leaves whose crunch sounded like a symphony to my adolescent ears. I've smelled fresh baked cookies only to run into the kitchen carefree and joy-filled. I've balanced on sidewalk curbs and rolled down hills with the only side effect being pure laughter. I've watched clouds form shapes in the sky almost like magic, and I've walked barefoot in the grass without a worry in the world. I've taken long walks with people who make me wish that the path we were on wouldn't end. I've watched sunsets and prayed in small groves of trees. I've felt my heart skip beats because I thought I was in love. I've waded in streams knowing without a doubt that my feet would leave footprints in every place I've tread, and known later that footsteps and hand-prints can remain in hearts as well. And now... I grasp these beautiful moments tight because throughout the change and pain in life I find it significantly more difficult to experience these things. Or perhaps the difficulty is less from the lack of opportunities, and more from the lack of my ability to see artistry and charm because life can often be coated in tragedy, heartbreak, and pain.
So how does one compile all of the magic and the pain? How does one process the Olympic moments with the pitfalls and darkness? Perhaps the beauty of life is that we are not required to live it all at once, and we are not required to live it all by ourselves.
So, for now, I'm putting one foot in front of the other and leaning for dear life against the One who has experienced this all before. For now, I'm praying for eyes to see the magnificence that is so graciously placed before me, and I'm praying for fortitude in every ounce of pain and suffering that I may experience. And most of all... I'm praying for all of the cuts and scars to be healed because carrying this all on my own has proved to be soul-destroying. And then I seek for extra faith and practice deep trust. Because my God and my Savior have never let me down, left my side, or broke my heart, so why would I doubt for a second His infinite ability to heal my body, my heart, and my soul? For as I practice and reach for daily faith I'm reminded that God is writing an unforgettable and breathtaking story for me, and He's simultaneously preparing me for glory and joy that I can't comprehend in this life. So may we all remember the enchanting moments that are perfectly ordinary. And may we all learn from life's agonies that prepare us for life's greatest joys. For no being can live in a state of endless bliss without missing some greater exquisiteness, and it's very possible to be in the midst of suffering while simultaneously witnessing miracles. There is room for all of it in life. And we must remember that there is a purpose for it all in life. As we do that, we'll walk paths that will bring us to our greatest peace and joy. And that's worth living for. This truth is for all of my single ladies! (Or should I say... single Lymies!)
It's no secret that a lot of people my age are out dating, getting engaged, getting married, and so on. It's also not a secret that I follow lots of chronically ill moms on social media because they inspire me and I aspire to be in that place someday. But alas, it also isn't a secret that chronic illness tends to put a damper on dating, and in my experience can sometimes have its way of extinguishing one's dating life altogether! But I'm not sharing this truth to write my lament of a single Lymie... I'm sharing this truth because, in a world where I constantly feel the pressure to date and not be single, I sometimes think it's okay to be single for the time being. A relationship is not a prize or a gold star that you wear on your sleeve. The person you love should not be a status that makes you look good on Facebook or Instagram, but rather love finds you with God's timing. And in the meantime, every individual has immense worth and potential on their own. It's no joke that Lyme disease is usually the deal-breaker with many men, but it's also a truth that I'm grateful to my Lyme for weeding out the liars, the users, the shallow, and the ones with all the wrong intentions. Life gets very real with me very fast because of my illness, and every guy I've ever dated always seems to know that the second the words "chronic illness" escapes my lips. So it can get discouraging, but it doesn't take away my abilities to do incredible things while I patiently wait for God to send me the man that will support me in my illness just as I plan to support him in whatever comes our way. So exercise patience. You are lovable, even with an illness. And you are incredible, no matter your ability... or disability in this case... True love comes in the right place at the right time, and in the meantime, Lymies and other chronic illness warriors can always choose to live their best lives. Thriving is always possible, in sickness and in health. I have been learning this profound lesson about happiness lately and this is it:
God wants ME to be happy!! Not just everyone else, not just healthy people, not just people who seem to have it all together, but ME. Little, insignificant, sick, tired, and sometimes a little bit crazy ME. For the longest time, I felt like I wasn't supposed to be happy. Like if I was happy it meant that I wasn't being refined enough in life, and I should be in pain because that's how I'm going to learn the hard knocks of life right?! WRONG. As necessary and as unavoidable pain and suffering are in this life, the end goal for each of us is still pure joy. Illness for sure has a way of refining you, to which I am thankful for those painful moments that teach me amazing lessons, but because I have Savior who empowers and a God who LOVES me, I know that I can find happiness despite my circumstances. Don't get me wrong, in NO WAY is this always easy, but if you're in that place of darkness right now I BEG OF YOU; please don't quit. Please carry on. Please put on your extra strength and remember that pain is not meant to last into the eternities. It is meant to refine us in the here and now, and WE WILL GET THROUGH IT. God is bigger than us. And He can and will ease our pains. The truth is that Lyme Disease or any chronic illness is no joke. It can be very intense and very exhausting on the daily. I've often found that there are many people who choose to walk in and walk out of my life because if you get too close too me, my natural fire can tend to singe your eyebrows!
Here's my response to anyone who has made comments about how I can be "a big sacrifice" or a "burden" because of my illness: Everybody that breathes can be viewed as a sacrifice! Every single person in this life will reach a point where they will be called to go through deep adversity and trials, and the reason for that is because we do not learn the greatest of life's lesson without a little sting in the process. We cannot truly know and appreciate joy and peace if do not first pass through intense pain. As we all come to those times in our lives, it would do as all some good to take each other by the hand and offer LOVE and SUPPORT instead of criticism and fear. (Believe me, this illness gives me enough fear without other people adding to it.) My reality is that I may cry a little more and little harder than most, but I also laugh a lot harder and a lot louder than most. I may experience intense panic and PTSD, but I've also found that it doesn't take much to get me to smile anymore. My heart may cry out in agony a little more frequently that I ever thought it would; but thankfully I've found my sparkle through it all that comes from being unique and rare. Everything in life has it's opposite. The goal is to look for the good and focus on the immense beauty that is often found among all the ugly. And the goal in our interactions with others is to see them for who they really are and who they have the potential to be, and then to love them through this scary, intense, beautiful, and miraculous life. This phrase is used pretty frequently in my house: "We'll take care of you, but we won't feel sorry for you!" Sounds harsh right? It may sound a bit harsh at first, but when you live in a house with only chronically ill people, you learn really fast that if you waste time feeling sorry for each other you never get ANYTHING accomplished in a day!
We all know the reaction of "I'm so sorry!" that chronically ill people commonly receive from others. I always feel minorly guilty when someone tells me how sorry they are that I suffer from chronic illness, mainly because I'm not sorry. I won't downplay how difficult chronic illness can be. I won't downplay the trauma, the dark nights, and the excruciating pain... but through it all, I've found that I just don't have the time to be sorry about it. I talk about my illnesses the same way that any other person my age would talk about college or career because it is such a big part of my life. I mention it casually in conversation because hiding it can be exhausting, and I talk about it all the time because raising awareness for such realities is SO IMPORTANT because I believe in hope for the chronically ill. With that said, chronic illness is a PART of me. That does not mean that it defines me or makes me any less of a person or any less capable. I may have certain disabilities that can make life a little harder. I may fight every day. I may face darkness that others don't have to, but I do all of these things unapologetically because self-pity will ultimately get me nowhere. So when someone opens up to you about their illness or deep dark sufferings, tell them you LOVE them. Tell them you BELIEVE them. Tell them you are HERE for them and you're NOT LEAVING. "I'm sorry" often silences conversation in this context. Say you're sorry when you've wronged someone. Don't say you're sorry because you don't know what else to say. Illness is for sure a tragedy. But every single one of us is currently learning to transform tragedy into beauty, and pain into healing. We are all simply looking for people that are wiling to help us along in this journey. Comment below if you can relate and what you'd prefer people say to you when you open up about your illness! Who feels like happiness and enjoyment that come your way are often accompanied with guilt because you're chronically ill??
I know I struggle with this REGULARLY, and so I'm here to tell you that you DO NOT have to feel guilty or ashamed during the rare moments of joy that bless your life when you're chronically ill. Lyme disease is an INVISIBLE illness, as are many chronic illnesses and disorders. We may not "look sick" 24/7, but you do not have to prove anything to anyone. What is "sick" supposed to look like anyway? I'll tell you that some days it's ugly, but some days life is good and those are the days that I must embrace in this journey. Pain and suffering do not have to be validated or believed by others in order for it to be very real, and very scary. And despite all of the pain and agony that I've faced in life, I've found that there is an awful lot of beauty and joy to be found as well; (it just may take a little longer to find than it does for the some). So the next time you're having a moment of joy, gratitude, laughter, love, or happiness, EMBRACE IT! Don't let guilt rob you of what you are worthy of, which is immense love and happiness. Yeah, we're sick and in pain (sometimes more often than not), but chronically ill people also have a way of lighting up any room that they happen to be in. Suffering is inevitable in life. You cannot avoid it, for it is often what shapes and transforms us into gold. But despite it all, God wants us to be happy. And through Him, we can find that happiness even in the midst of suffering. Comment below if you can relate and tell me about your life's happy! No matter how old I get, it always seems that around back-to-school season I can manage to conjure up that feeling of an antsy little school girl; eager and apprehensive for her first day. It often seems like no matter how hard I attempt to avoid it, I get that strange "butterfly in your stomach" feeling, accompanied by anticipation for the new school year. Insecurity and unstable footing repeatedly accompany the nostalgia, and it often leaves me feeling sick to my stomach. How is it possible that something as simple as everyone going back to school drudge up such ugly and unnerving feelings? Because these memories are a vicious cycle of guilt and shame that circle through my mind every fall semester... Because my life looks VERY different from all of my friends in college. I was eighteen years old when I walked through the door of my first apartment. I was simultaneously eager and terrified for the adventure that was right at my fingertips, and everything smelled new and fresh. I was always terrified of this first step into adulthood, but feeling it painfully necessary I managed to dive headfirst into my first semester of college. I grew up singing, and I always felt like my vocal abilities were a gift from God, something that I had great passion for, and what my future held. Music was what I was supposed to do, and all that I thought I wanted or knew how to do. I was a vocal performance major, diving into 16 credit hours of music classes. And as nervous as I was, I felt prepared and ready to delve into endless hours of vocal practice, theory, piano basics, aural skills, and performances. Music was about to consume my entire existence, and at the time I felt perfectly okay with that. I'll never forget my first day of college as I managed to get lost seemingly dozens of times, and mentally stumbled over all the different textbooks that seemed to make my head spin! That quiet little mouse of a girl sat quietly in the back of each class with her stomach in knots, avoiding eye contact at all times and trying desperately to remember every ounce of theory and vocal technique. For the most part, I was like every other college kid: young and eager for my future to begin. But what most people don't know is that I was far from being an "average college kid." My symptoms began long before college, but I easily managed to push them to the side in attempts to fit in with my peers and create a future for myself. When college hit, my symptoms simply spiraled downward and left me experiencing enough discomfort that before my first semester I was tested for coinfections and other possible health problems. I remember laying on a bed telling the nurse about the college I was attending as she took thirty vials of blood. No matter what, I wasn't going to let anything get in the way of my college plans. School soon began and among all of the regular college stress, I began to experience extreme fatigue, joint pain, muscle pain, regular panic attacks, and extreme pain in my lower abdomen that would come in waves. The problem with this predicament is that I was "supposed to be in college," having the time of my life and learning all that I could for the benefit of my future, but these seemingly always lingering symptoms made it near impossible to successfully do anything. I recall coming home every day and crashing on my couch, only to wake up realizing that I was late for a tutoring session or a rehearsal, which only caused greater stress and anxiety, which then caused an increase in symptoms. With this brewing storm over my head, my grades dropped, and I found myself fighting for test accommodations that didn't even pan out to be all that helpful. I found myself crying on the floor of my apartment regularly, wondering why I seemed like the only college kid in the world that couldn't handle school in any way, and I often spent Saturdays on the couch or in bed. I was diagnosed with chronic Lyme disease about half-way through the semester. Treatment began rapidly, and in my attempts to stay at college I decided to move forward with treatment on my own, in an apartment with roommates that probably thought I was completely nuts. Treatment added the extra stress of diet changes, sleeping with oxygen, and taking ridiculous amounts of pills and supplements every day that I hardly had time for. And at the end of every day when I would check and record all of my vitals for my doctors, nothing changed, and nothing seemed to improve. Throughout all of the pain, anxiety, and desperately trying to stay on top of school, I prayed desperately to know if going home was the right thing to do, and I got an overwhelming and resounding yes. I found myself walking through the front door of my house and collapsing on the floor about two thirds into my first semester of college, and I never went back. And I never will. I do not record my story of a 22 year old college drop out to claim that everyone should follow in my footsteps, or to say that those who are in college should quit now before they're ahead, for I don't actually believe that. What I do write this for is to say that college does not necessarily equal success. Those who have walked the path less taken, away from university and college life, to heal from chronic illness should be celebrating that MASSIVE victory, not feeling embarrassed or ashamed from their differing experiences.
I learned fairly quickly that when you choose not to attend school in your young adult years, everyone and their dog will try to convince you of all the reasons why you should be in school. It's important to remember that those people do not know the battles that you are fighting and SUCCEEDING at, and you do not have to allow uneducated comments even an ounce of your ground. For your ground is one of blood, sweat, and tears that we often face by ourselves. For our arena is often unseen and unrecognized, yet very real, and very scary. When I first left school, I wanted desperately to go back. I craved the need to fit in with my peers, and I felt like an utter failure because for the first two years of my Lyme battle school what absolutely impossible. What I wish I knew back then was that life does not end when school does, and there are often things in life that can educate you in ways that a college education possibly never will. God has been my personal mentor and tutor for five years now, and I couldn't be more happy with my decision to leave and not go back. I have now attended an online school where I received my health coaching certification. I'm well enough to work, and am starting my own business. I find joy on the days that I feel good. And on the days that I don't, I have room to breathe and recuperate. Life is very different than what I ever envisioned it to be when I was a freshman in college, but I am proud of my battles that I have walked out of broken and scarred, but still held together by God's grace and enabling power. There are two ways that you can look at an experience like this: call me a college drop out, or call me thriving in the Lyme life. Either way, I'm happier than I've ever been as I seek for success and happiness. I no longer believe that success comes from a degree, as big as an accomplishment as it may be. The greatest success we can experience in this life lies within our hearts, our relationships, and our ability to endure and conquer the afflictions of life. Your worth or intelligence is not based on your college education. Quality of life is more likely measured by your heart and your spirit and how they propel you to whatever beautiful destination is in store for you. |
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