Blakeley and I are long distance Lymie friends who originally met through our various social medias. Ever since then, we have become so close even being so far away from each other. Because of our unique situation, we thought our audience would enjoy our thoughts and insights on chronic illness and maintaining relationships through chronic illness. Blakeley is like a sister to me, and I am so thankful for God's hand in bringing us together into this blessed friendship.
For the purpose of this particular post, and to make it easy for all of you to tell our answers apart, Blakeley will be answering questions in BLUE and Claire will be answering questions in RED.
A Little Bit About You!
I'm Claire, I'm 24, and I live in Utah. I am a small owner of a gift shop, sales representative for a monument company, and I have farm girl running through my veins with whatever time in my schedule is left! I love goats and the color pink, and I am the dog mom of multiple Yorkie puppies! I love crafting and creating beautiful things on my free time, and I can often be found with my nose in a wholesome book. Learning is my passion, especially learning about God and how I can learn and grow spiritually into a better person everyday. I also especially love learning about health and wellness. I am a certified health and wellness coach, and I've learned how to achieve health and wellness through my Lyme journey and I am working to achieve it a little more every day.
Even more important that any of the above labels, I am a daughter of God and I love losing myself in His work and His word. I know that because of Him there is a purpose for all the pain behind Lyme disease, and He is teaching me a little bit every day what that purpose is.
I was diagnosed with Lyme when I was 18, was sent home from college, and began the journey of a lifetime healing from Lyme. I have been actively treating Lyme ever since then and I am about 80-85% of the way better. I love blogging and being an advocate for the chronically ill, and I hope that I can continue to do that even as I continue to heal from this illness.
Hi, I’m Blakeley! To introduce myself, here are a few random facts about me! I’m 19 years old, I absolutely love anything that’s colorful and bright! I have a little dog named Cookie who has rightfully earned the title “sidekick,” as she is the most loyal and sweet dog ever. I love being with my family, being outside in nature, and I love Jesus with my whole heart. I am currently learning more and more about myself each day, as I am on a journey to find healing from Lyme disease. I spend many of my days in the bed, sick from this disease that tries to rob me of anything and everything.
I’ve now had the Lyme diagnosis for over two years. I’ve been treating it from so many different angles.
Most of my time these days are spent trying to move towards healing. That means treatments, therapies, or herxing from treatment. This journey and fight is extremely difficult. Lyme is a disease that steals so much, and leaves so little. Through all of this, I’ve tried my hardest to remain hopeful, and to keep my eyes looking towards Jesus.
How did you meet?
So way back when I was writing a blog post about how to cope with people's reactions to you when you have chronic illness, I posted a question about it on my IG story. Blakeley's mom was originally the first to reach out to me by answering that question on my story. She told me about her daughter who had lost all of her friends since her Lyme diagnosis, and I told her that I related so well and that if her daughter ever needed someone to talk to to have her send me a direct message.
Low and behold, I heard from Blakeley a little later with some idle chit-chat on IG. It was right about that time that I got my dogs, and after that I kept messaging her and asking her questions about puppy raising because I saw that she had gotten a dog about 6 months before I got mine. We literally originally bonded over Lyme disease and puppies! And the rest is history!
Claire and I met on Instagram! I had followed her, and she had posted an IG story about how having Lyme usually leads to people leaving you. She asked people to share their stories about how it had happened to them. My mom actually ended up telling Claire my story, and Claire kindly responded and told her that she’d love to talk to me. I ended up sending her a DM, and really it all just happened from there.
We both had puppies at the time, and we really bonded over that in the beginning. I think we just really started enjoying talking to each other, and getting to know each other more and more. Within a short period of time, I knew that I could trust her, and that we both needed each other. Really, we became good friends very quickly without even trying.
What was your first impression of each other?
Honestly, being a social media influencer and advocate means you talk to people everyday. Some of those people you're meant to know, some you're meant to help, and some are meant to be your best friends. And some are all of the above. Blakeley was truly a blessing to me from the very start, but I usually don't expect such a deep sisterhood to develop from social media. My first impression of her was her kind and generous heart, and it wasn't long before I realized that we believed and valued a lot of the same things, and we had really clicked from the very beginning.
My first impression of Claire was definitely that she was very kind, and caring. She is the strongest person I know. She reached out to me, and encouraged me even when she needed to be encouraged herself. She is extremely selfless, always putting others first. She is such a fighter, and she never gives up. She is also extremely funny! She never fails to make me laugh. She celebrates anything and everything, and she just has such a fun personality! She is always working hard behind the scenes to bring a smile to people’s faces, and to help the people around her feel loved and cared for.
How did Lyme originally connect you as friends and how does it still connect you now?
Lyme disease is EVERYTHING when you have it. It leaks into every aspect of your life, and I sometimes have difficulty recognizing when it's blessing my life instead of making it harder. If it wasn't for Chronically Beautiful Life, I would have never met Blakeley. And if I didn't have Lyme, I never would have started this outreach through my blog and social media, which is where I meet all of the beautiful friends I've made that have Lyme.
Lyme was originally our common ground. I believe it's always good to find common ground with your friends. At first we could talk all about what Lyme was like, what we were going through, and what our stories were, and it was a safe space to express all of those things. And after we had shared our darkest moments of Lyme, we literally learned that we could talk safely with each other about basically anything else as well!
Lyme connects us now because we know that whatever the other one is going through, the other has our back. We stand together in the light so that the darkness seems less dark. We know exactly how to respond to the other's pain because we've been through it ourselves. And it's a rare treasure to have that in anybody you come across in the chronic illness journey.
Lyme is often a very isolating disease. Last year, I found myself longing for someone to understand what I was going through. When I messaged Claire, she told me her story with Lyme, and I immediately felt understood. If I wouldn’t have had Lyme, I wouldn’t have followed her on Instagram, and then we wouldn’t have connected. I guess having Lyme has pretty much everything to do with us getting to know each other initially! We’ve both been through so much, and definitely understand each other so much because of that.
There hasn’t been one day since we first met on Instagram that Claire hasn’t gone out of her way to ask me how I’m doing. Lyme brings you to a point where you see life through different lenses. We support each other daily throughout our battles because we’ve been at that point that was so dark and lonely. I’ve found it to be extremely important in our friendship to talk about the things we face with Lyme. To give love and support in those messy, hard places. It connects us in such a hard, but beautiful way.
How do you maintain such a good friendship from so far away?
So I live in Utah, and Blakeley lives in Alabama. That's exactly 1,437 miles from each other. That's quite a bit of distance to maintain such a good friendship! Honestly, friendship isn't about distance. It's about EFFORT. You can put as little or as much effort into any particular person no matter how far away they are, and you will be as close or as distant as your effort is.
Keep in mind that you are not meant to be best friends with everyone, and that's okay. Some people are meant to walk into your life to teach you, to learn from you, to offer love, to give love. There's a plethora of reasons why we can cross any particular person's path in this life. But one thing I know for sure is that if you live you most authentic and true self, you will find the people that are meant to be your people. Even if it takes some time.
Blakeley is one of my people. She gives. She loves. She helps. She offers comfort. She listens. She makes me laugh when I need it. We also have very similar beliefs and values, and the things we disagree on we listen to each other with open hearts and respect for the other person's beliefs. That's how we maintain. She does all those things that I also strive to do myself.
Is it easy all the time? No. We talk all the time about how we wish we lived closer so we could be an actual human to each other, but at the end of the day it doesn't matter because we're close at heart, and God connects us the rest of the way for now.
I really don’t have some crazy explanation of how we maintain our friendship from so far away. Honestly, it just happens in the day to day. We talk to each other every day, and we become closer because we both enjoy getting to know each other. We hold each other up when the days are hard and long, and we celebrate each victory, no matter how small, along the way.
It’s never been a challenge to maintain our friendship. God has hugely blessed both of us to be able to become such good friends from such a long distance! I don’t think that either of us expected to become such good friends. It just happened over time, and I’m very grateful that it did!
How do you best support each other through Lyme disease and any other hardship?
My favorite thing about Blakeley is that she doesn't expect our entire sisterhood/friendship to be based off of text messaging. I love DM's as the helpful tool that they are, but I greatly appreciate other forms of interactions that make me feel more human in all of this isolation we're all experiencing.
Mail is a huge tool we use. Especially when the other is having a particularly hard time. And it's not about the STUFF that we send, as much as the huge amount of heart that goes into it. Sometimes I just get random letters from Blakeley in the mail and they help lift the burden of Lyme and help me to realize that I don't have to carry it all by myself.
We also utilize tools like phone calls and facetime. I can always count on laughing hysterically when I'm on the phone with Blakeley. Especially after a long drawn out time of grief or pain.
The main thing is that we SHARE LIFE with each other. We celebrate life together. We cry together. We vent together. Friendship is a lot of sharing, and it always helps when the person you share things with listens well, and shares with you as well. And then of course after all the sharing, I believe we both spend lots of time praying for one another as well.
If you have a chronic illness, or are close to someone with a chronic illness, then you know how draining it is. Lyme disease steals so much away from you. Sometimes you’re left completely exhausted and defeated.
Claire and I both know and experience that. We really support each other through Lyme disease by just always being there for one another. Since we can’t do that in person, we take the time to text, call, pray for one another, or even send surprises in the mail.
Even though Claire lives no where near me, I know she’s always there to encourage me. She’s there to support me. She’s there to remind me to never give up. When we’re both having bad days with Lyme, honestly, we’re a mess! We’ve cried together, and we’ve laughed together...but no matter how bad this disease gets, or how defeated we both get, we never let each other give up. We push each other on. When we fall, we pick each other back up and keep going.
What is one thing you have learned from each other throughout your friendship?
Honestly I've learned that good people still exist. I have been at my wits end so many times throughout Lyme with how hostile, mean, and dishonest people can be toward the chronically ill. Don't get me wrong, I know that good people exist. But so many times before I started Chronically Beautiful I wondered if maybe I just wasn't meant to meet nice people.
I started my IG and I learned that there are absolutely good people left in the world, because I have met the kindest people through IG and my blog. And then when I met Blakeley, it was a huge realization that I'm still worthy of love and care, even with Lyme. Sometimes your born with a great sister, and sometimes you meet her later in life. Although I'm also blessed with a great sister by blood too, I'm thankful for the sister that I have found in Blakeley.
I’d say that it’s a lesson of love, care, and sacrifice.
Claire is one of the most caring and selfless people you could ever know. Even when she is really struggling, she takes time to make sure I’m doing okay. She always goes out of her way to make every day a little bit brighter.
Even when she is in the darkest place, if she knows I need her to listen, or to just be there for me, she does it with no question. She is always there, reaching out her hand to help. She has taught me so much about loving and giving to those around me. She’s taught me about sacrificing, loving, and caring for any person who is struggling, or needs hope.
What is one piece of advice you would give to someone who is chronically ill about making and maintaining friendships?
Friendship is not about what one can GET out of someone else. And it's not solely about what one can give either. Friendship is about the giving AND receiving of light.
Every single one of us can be a being of light to others if we choose to be. All of us are made of light, and every good thing comes from God. So when we are sharing goodness with one another, we are spreading light that is the bond that holds people together. This is a glorious blessing that God gives us if we choose to partake of it.
Blakeley and I both participate in giving AND receiving light, and that is why we can be such close friends from so far apart.
There are so many lessons that come with being chronically ill. It’s extremely difficult, and sometimes you have a hard time interacting with people when you’re so sick. I think that a very important thing in a friendship when you’re chronically ill is to make sure that the other person knows your physical and mental limits well.
Claire knows that some days I won’t be able to talk on the phone, and she understands that. She knows that some days I’m not able to text her as much. She knows and understands when I need someone to listen to. Get to know your friend as much as possible. Learn their physical and mental limits, and respect them.
Understanding and compassion go a long way.
Claire and I both have Lyme disease, and we’ve learned so much about each other through that. We’ve learned to grieve with and for each other, and to also be happy with and for each other. Our friendship is definitely not perfect, but it’s special, and beautiful, and sometimes messy. Friendship means loving, caring, understanding, and forgiving. Even when it’s hard.
We want to thank each and every one of you who submitted a question to us about us, friendship, relationships, and coping and maintaining when one or the both of you face chronic illness or disability. We had so much fun writing this post, and we hope that as you read it you will gain as much insight as we did writing it!
For the purpose of this particular post, and to make it easy for all of you to tell our answers apart, Zach will be answering questions in BLUE and Claire will be answering questions in RED.
I'm Claire, I'm in my twenties, I love crafting on weekends and working hard when I can on the weekdays. I love goats, the color pink, and anything beautiful from the inside out. I manage a small gift shop during the day, and I'm a complete farm girl in the afternoon. I'm a certified health coach, blogger, and lover of learning. The truth is that I wear many hats. There are some days where I feel like I can take on the world, and there are other days where I submit to laying in bed and managing pain and sickness. This is because I have Chronic Lyme Disease and Endometriosis.
I was diagnosed with Lyme about five years ago, two years after my mom was diagnosed with the same illness. Together, my mom, dad, and I have walked the frigid storm of treatment protocols, herxing, flaring, pain, and sickness. We've pealed each other off of the ground after passing out. We've cooked meals for each other through pain and sorrow. We've held each other's hands through tears, and we've walked around the house, arm in arm, sustaining the ones that can't walk due to pain. We have slowly made our way back to quality of life. And although we are not yet "cured," and life is far from perfect, we survive this disease through God's grace, and Christ's enabling power and guidance.
The truth about Lyme is that life can still be happy and beautiful even with such an awful and life-altering illness. God grants me that joy and hope when I need it in many ways. He granted me that hope through scripture and prayer. He blesses me with that hope through peace, calm, and relief of pain. He blessed me with that hope when He sent me down to parents who care for me so well. And he grants me that hope through the people who choose to stay in my life no matter how sick I get.
Hi! my name is Zach! To start, let's cover some of the basics:
I am 21 years old and I work on an organic farm currently learning many different techniques on how to grow and eat organic. I'm also learning how to maintain my health while navigating my way through the healing process, and in more ways than others, “the refiner's fire." Maybe I am what you could call a wearer of many hats, and acquiring new hats every day! Although some may disagree with that, that's ok, because no disability or illness should stop anybody from doing what they want. I once heard a woman say that “everything is figureoutable." You just have to find out how to do exactly what it is that you want to do, then do it. Simple, right?
Now, let's get the large elephant out of the way. You may be wondering what illness or disability I could have because I helped answer some of the questions in this article. I was diagnosed with Tourette's Syndrome. Tourette's Syndrome is a Neurological disorder which, in short, causes a lack of communication between the left and right brain. This lack of communication sends misfired signals to the body creating something you may have heard of called “tics'' (these are not to be confused with ticks…but also an underlying or root cause from ticks). This illness, along with many others, is neurological and physical. This could be why life is more difficult than not at times.
As a baby, Tourette's would cause my whole body to shake, and as I grew older I would either drop or develop new tics. As Tourette's caused a lot of energy (to say the least), I often had to find different outlets for this extra energy to be used up. So after many years of basketball in the front yard and then trying many different sports as a teenager, I ended up in the multi-sport game of water polo.
Now while I have had this “companion” my whole life, I did however recently discover this was considered a disability. Shocking as it seems this was news to me. I may have considered it at one time, but I didn't allow it. Even though most if not all around me did see it as a “problem,” or an “annoyance,” “different,” “weird,” or in some cases “flirty,” or “creepy,” I never really thought of it as a disability. So I wasn't the most outgoing kid and I didn't have a lot of friends, but this didn't exactly stop me from doing what I wanted to. Nor did it stop me from acquiring a few friends either.
I have learned how to overcome through complete faith in my Savior, Jesus Christ. I do know that healing is possible through the refiner's fire. And I know that it is through these fires that we are perfected and healed!
What Are Your Symptoms and How Do They Affect Your Life?
Tourette's Syndrome has two parts; it starts neurologically and ends physically. This is possible because everyone's physical actions start in the brain and end as a physical action. Ex. shaking someone's hand, nodding your head, etc.
One of my greatest symptoms are tics. Tics are the things as above, but involuntary and random. For example, I have a tic where I flick my pinky finger a certain way, or another tic I have affects my breathing. As I said before, I've had tics come and go or get worse. Tourette's affects my life in many ways. As for the tics, they are there a lot depending on what is going on in the way of moods. This means my emotional state can affect them and make them worse. Being nervous or anxious greatly causes them to become very escalated. On the other hand, if I am calm and comfortable then my tics are very small and lessened very much.
My symptoms vary and include but are not limited to:
One of the most difficult aspects of Lyme is that a lot of people don't believe that Lyme disease is a real illness which then leads to rejection by friends, family, doctors, etc.
I've spent a lot of my Lyme journey shedding tears over the disbelief of other people. People don't believe it, or they don't understand it, and a Lymie is often treated as the outcast or the "weird one" of the group.
Making and keeping friends has seemed nearly impossible at times, and the crippling physical symptoms along with the neurological ones can seem like the heaviest burden to bear at times.
How Did You Two Meet?
The first time I met Claire was actually during an interview with her dad. As was mentioned above, I work on a farm. I also happen to work on the family farm. So I came to find out that she too helped with the interviews. Our first time meeting was very formal and quite short.
Picture this: I'm standing in our work building for the farm (we call it "the white building) with my dad, waiting for some kid to show up for an interview after many frustrating and failed interviews, and I'm wearing a floor-length dress because I had a prior engagement, and Zach walks in. I had zero expectation that this interview would go well, and after many questions towards Zach and a noticeable difference in Zach compared to other interviews and young people we had interviewed, Zach left and we decided to hire him as our ranch-hand. That conversation went something like this:
Me (to my dad): "Well what do you think?"
Dad: "I like him!"
Me: "Me too! Let's hire him!"
Let me just say, never in my wildest dreams did I imagine that our hired help would become such a big part of our family. But as he spent time with us on the farm, he quickly over-exceeded his job expectations and became a close friend to me and my parents. All three of us love his addition to our farm and family, and we care for him very much.
How Did You Two Become Friends?
It's always good to get along with the people you work with, but it's even better when the people you work with become like family to you. My dad always taught me to treat your employees like family and care for them as such. And with Zach it just all kind of fell into place like that.
Every time I'd find Zach in the white building, he'd wish me a good morning and asked how I was doing. This was before he ever knew about my illness, and as a young person in this world, I found it refreshing that a random person who didn't know me inquired as to how I was frequently, when frankly if he didn't want to he didn't have to.
Zach and I started training our cart ponies together that summer, and as we did so our conversations seemed to be about anything from school to dating, farming to equine therapy, to eventually sharing our experiences and with Tourette's and Lyme. Zach also happened to be by my side helping me for nearly the entire transformation of my gift shop and we shared so many thoughts and laughs through our experience that we just couldn't help but being friends outside of work as well.
Claire and I became friends through working on the farm together! About a year and a half ago when I started working for her family, we had 2 ponies. So at the time and she would come out later in the mornings to work and brush down the horses so we would have about an hour or so to talk to each other and just get to know each other. I think we also became friends because she thought I was super weird because every time I saw her I would kind of perk up and say "Hi," and ask her how she was. (She admitted that too.)
After a while, we started becoming better friends. Fast forward a few months we became close friends and I was washing dishes in the kitchen after dinner! I think we really became friends because we weren't afraid to be open and honest with each other.
What Was Your Initial Reaction to the Other Person's Illness?
Common to Tourette's is the fact that if someone with Tourette's is nervous and stressed, their tics are worse. This seemed to be the case with Zach during his job interview. I remember saying to my dad after Zach left, "What was that thing he was doing with his face?" to which my dad replied, "I'm not really sure, it's some form of disability."
Dad later came inside a week later after working with Zach and announced, "Okay, Zach has Tourette's!"
Honestly, finding out that Zach has Tourette's never really made me see him any differently. Yes, I noticed his tics, but it I think because of my history with Lyme, it never occurred to me that that made him "weird" or "different."
Now that we've been friends for over a year, Zach still tics, but I just don't notice them unless I'm consciously looking for them. I just don't see "the kid with Tourette's syndrome." I see Zach and how much of a hard worker he is. I see our friendship. I see his effort and care. At the end of the day, the Tourette's just doesn't matter as much as the person does. Yes we have hard moments. Yes it's not picture perfect because we both have physical and mental struggles. But as we choose to help each other and have compassion on each other through the hard, our illnesses just seem to dissipate.
In all honesty, I don't remember. And to be even more honest, I don't remember caring either way.
Although I did care about her as a person because she more than deserved that, her illness didn't really bother me. Whether it was because I didn't fully know at all what it was, or because I didn't know that I would find out many months later what it truly was. Now, I did ask questions just so I could know and understand better. I don't remember being shocked or thinking:
“I can't be friends with a sick girl," or “Oh my goodness! How bad is it?”
That was probably because I had my own “conditions" (as I called my own at the time), so I just kept being friends with Claire. I didn't want an illness to affect a friendship because that's how I had been treated my whole life; as the “oh you're weird so we can't be friends" kid.
I will also say this:
Being Claire's friend and having such an amazing friend who does have a chronic illness, has shown me what love truly is. It has also shown me that the illness does not define the friend with the illness but it can define who you or I as a friend really are.
How does your illness/disability make your relationship different from other peoples relationships?
The illnesses and disabilities that we have make our friendship different (I think I speak for her when I say this too) from other people's relationships.
Our relationship is different because the way the world views people who are sick, is not as they should. Our relationship is different because it is built on an emotional connection to each other and God. It is different because a lot of relationships in the world fail because one or both look inward for what they want rather than looking outward as to what they can give.
Claire once told me:
"Zach, whenever you do something for anybody, ask yourself this: 'Am I doing this because I truly love this person or for some other selfish reason?” As the scriptures says, “If ye love me, keep my commandments.” So if we love God first and are following Him, we naturally love each other a lot better than if we didn't.
Due to our various difficulties, our focus (to the best of our ability, might, mind and strength) is to God because we know that He helps us progress and move forward. When we face a fork in the road or a decision to make, is our choice pointed towards God? Or is it based on what we want? If we love God, we naturally choose the better choice for us and God. If we choose to love God, we choose the best decisions to progress. Similarly, love in any relationship is a choice. No one just falls in love. We either choose to love, or we choose to stop loving. I was once also told by Claire, that “Love at first sight, is just lust at first sight.” True love is not what the world portrays it as. Life can be truly hard, but true love does not falter because of a truly hard situation. Especially when we put our trust in God, because God is love and He can walk us through anything that we face!
The illnesses and disabilities we have, if we let them, can be our best teachers for ourselves and others. Trials are often “humbling blocks" (or sometimes just really big rocks) which can allow God to teach us through our illness, disability, or whatever it may be.
I used to believe in "love at first sight" until I was diagnosed with Lyme. I then learned that the men who claimed to love me at first sight were really just sweet-talking their way into what they wanted.
One does not "fall in love." One GROWS in love.
I second everything Zach just said!
I'd just like to add that one more thing that makes us different is that we often simply just don't feel well. And so our time is spent doing low-key things to help others, or grow our friendship. I feel like a lot of young people get bored of their "sick friend." Zach and I don't, because we get it. We don't measure one another's value in how many "cool" and "fun" thing we can go out and do. We measure it by what's in each other hearts.
How Do You Support Each Other?
I'd like to answer this question by sharing a story about Zach.
It's not news to anyone in the chronic illness community that Lyme Disease can sometimes be intense. I have suffered pain so server that it has brought me to the floor in screams and seizures. There was one particular time when Zach just happened to be there (and many similar times after that) when I was in this form of pain. I just have to say that I have never in my life met a person other than my parents who has been willing to sit with me and be there for me multiple times when I'm in that state of intense and unbearable pain. That day, Zach jumped right in and did everything he could from holding my hand and reminding me to breathe, to filling up my hot water bottle and helping my dad make dinner that night so we would all get fed. Zach doesn't get paid to do stuff like that. It's not part of his job. Those things are acts of love that Zach chooses to do on his own time, by his own free will and choice. And that's love.
The truth is that Zach makes space for my pain. We have a wide variety of pain and sorrow, joy and laughter in our friendship. No, our friendship isn't perfect. Yes we sometimes disagree and argue. In fact, there was a time that we did that more often than not. The different is that Zach stays, works things out, and is constantly trying to better himself so that we can improve and strengthen each other.
We support each other best when we are individually striving to be our best. We say we're sorry. We forgive. We love. We encourage. And sometimes we give each other a dose of tough love when the other needs to hear it. We pray for each other. We have each others backs. In all reality, we seldom ask each other: "What can I do for you?" We simply strive to see a need and fill it.
Claire is a huge support for me in my life whether she realizes it or not. She is such a strong woman and makes room to mourn with me when I mourn and to be happy with me when I am happy. She makes room for my emotions. She celebrates the smallest of successes and she knows how to make me laugh! I know that is small, but when one is sad, the smallest smile is ALWAYS the brightest.
As I realized very recently, she is also the kindest woman that I know. You see, the world thinks that being “kind” is just sugar coating and making everything nice and sweet. Which just isn't true, and sometimes we need a real friend to show us the reality of the “real” in life. She does that when I need it. She also pushes me to do the things which even I know will help me to progress and is a huge support even when she doesn't feel well.
The biggest way that Claire supports me is through kindness, love, grace and compassion.
What challenges arise and how do your resolve them? How do you get through the hard times?
This is a very good question, because everyone will have challenges!
Some of the biggest challenges for me and Claire I think are that we both have neurological/physical issues because neurological or nerves manifest physically. There are some days when our nerves are on fire!! And unfortunately most of the days are on the same day! The challenges faced are many different ones such as anger or “grumpy explosions,” as we have come to call them, and the biggest way we have better learned to resolve them is through kindness. Kindness is growing in love, compassion, and grace. It is understanding their situation or their feelings and putting that above your own.
Sometimes, we resolve hard things very slow, and sometimes we resolve them separately. For the most part we are there for each other to help each other through the hard times. A huge way that I get through hard times is gratitude. Gratitude towards God and even those around you is the best way to get through a hard time. Sometimes it's just holding the persons hand and giving a shoulder to cry on. More often than not through all the “grumpy explosions” and outbursts, prayer is how we get through it. Prayer, faith, increased love for each other and looking for the good in life. Claire and I sometimes throughout the day will ask the other what are three happy things or what has been the best part of our day so far. This is a good exercise because sometimes we just need to stop, stand still, and focus on God and the good that is around us!
What is one piece of advice you would give to someone who faces chronic illness/disability about making/keeping friends?
The best piece of advice I can give is this: God is key!
If we follow God, learn of Him, and build our personal relationship with Him, our relationship with anyone who does the same will grow immensely as well. I have learned that love really does triumph all and if we allow LOVE to take over rather than what we think should take over (anger, bitterness, hard feelings, fear or whatever it may be), then we can help our relationships in life to grow much more! ("God gives us weakness that they may become strengths.")
With that, I will also add this: Forgiveness is also an essential part of any relationship because we all make mistakes. All of us. And no matter how close of friends we are, we will make mistakes, misspeak, or say something we don't mean. And it can be hard to let go and to forgive, but the more we do that and allow room to see the other person for their good qualities, the stronger the relationship will grow and the small things won't matter as much because it will become easier to forgive and see the good in each other.
I second all of what Zach just said!
I'd also like to add this:
Don't chase your friends.
I spent so much time the first three years of Lyme playing the game of "chase" with my friends, siblings, and other relationships. I felt like because I have Lyme I had to prove to those people that I was worth spending time with. I had to prove to them that I had something to offer.
The truth of the matter is that if you have to prove to someone that you're worth being in their life, than they are not worth being in your life. You are worthy of love and care even with an illness.
I never had to chase Zach. We became friends because we both showed care towards one another, and that care grows everyday. That's friendship. That's love.
If you're having a hard time making or keeping friends, wait patiently on the Lord. I am sure that He is preparing people for you that will be your people and will love you no matter your illness or disability.
Before Lyme Disease, I thought I knew what love was.
I thought that partying with my best friends on the weekends was love.
I considered pooling your money on a Friday night for pizza, Mt. Dew, and a bag of Hershey's kisses to be love.
I assumed that a friend taking me to lunch was love.
I accepted endless teasing and poking fun at each other as love.
I regarded a goodnight kiss to be love.
I believed that the absence of criticism and the acceptance of my mistakes was love.
I figured love was when someone knew you from the inside out, or at least you think they do.
Then I got sick... Long term sick. The kind of sick that tortures you simply by removing your quality of life and peeling away the experiences that you used to think are what made life worth living. And surprisingly, I found that as your quality of life walks away from you, so do your friends, family, and neighbors as well.
I've heard many people say that you don't know what love is until you've been married for an extended amount of time. I actually believe that you don't know what love is until you suffer, or someone you love suffers and you choose to stay.
It's not often thought about enough. What would you do if someone in your life fell ill? Or became paralyzed? Or suffered a trauma? I mean, who wants to think about the worst that could happen? (Nor do I recommend falling into my friendly addiction of always "assuming that worst.") The answer to that question from the average person is commonly "I just don't know." And I suppose you can't truly KNOW until it happens... or can you?
I was diagnosed with a debilitating illness five years ago after I had watched my mother suffer from the same illness two years prior. Naturally, my knee jerk expectation from the members of my church and community was that the people in my church congregation (that I had heard talk of service and selflessness) would be darkening my door to offer listening ears, hands to hold, kind remarks, and spiritual refreshment. I had spent years hearing about how that's what we do for those who are suffering, so naturally, I thought all that talk was real. And it wasn't.
Now, don't get me wrong; this isn't to say that there are not wonderful Christians or people who do these things. This also isn't to say that I doubt the goodness of God, His love, or the truths that are taught in my church that I know in my heart are true. My effort to point this out is, simply put, to encourage all (whether you belong to my church or not) to try a little harder to be a little better.
My dilemma and the dilemma of MANY of the chronically ill is this...
Good, well-intentioned neighbors, church members, friends, and family are prepared for difficult trials that are short-lived. At the beginning of every difficult road people bring meals, and drop off brownies at the front door; but as time passes for the chronically ill, the meals turn into cravings for someone to talk to and offer comfort, and the brownie principle is quickly converted to sentences like:
And sometimes the obvious rejections of your illness comes in the form of a blank stare and an obvious discomfort as you sit across from someone trying to explain your illness that they are completely dissonant about.
But the problem with all of these responses from compassionless and unfeeling people is that it breaks down the chronically ill. Negligent and thoughtless words can shatter a soul. Lazy comments can cause a loss of hope. And shifting discomfort because sick people are "uncomfortable" makes us feel like a disease, not a person. And the worst of this reality is that eventually, all these hard knocks from people fade into lack of human interaction altogether; because nobody knows what to do for the seemingly never-ending "needy person."
We are not just bodies that lay in our beds. We are not lazy. We are not just looking for attention. We're not "the needy" that can be meagerly paid attention to in order to check off the "good Christian" checkbox every week. We are PEOPLE. And every living person that I've ever known has a basic human need for LOVE.
Christ never taught survival of the fittest. (The sick are meant to die where the healthy thrive and dominate.) Christ taught that "if ye have done it unto the LEAST of these, ye have done it unto me." -Matthew 25:40
I can guarantee you that if you spent your time with "the least of these," you would learn things that would change your life.
We live in a world that is virally shedding the idea that if someone is sick, the BEST call to action is to stay away from them as far as you can.
Not only is this completely against Christ's teachings, but it naturally shatters the human heart and allows cold blood to run through the veins of many people who are DESPERATE for someone to instill love, hope, or peace in them.
Lyme disease taught me something different than this world philosophy about people and love. And despite the cries for distance and shallow forms of "love," I would highly encourage you to apply the healing balm of FAITH combined with ACTION towards "the needy people" that you know.
I now know that LOVE is COMPASSION.
I know that LOVE is a listening ear, anxiously engaged to help in any way they can.
I know now that LOVE is patience, long-suffering, and choosing to STAY in someone's life even if they suffer long-term.
I know that LOVE has little do with parties and social cliques, and more to do with simple moments and acts of service.
I know that LOVE is peeling the one you love off the floor after they've passed out.
And LOVE is washing their hair because they can't wash it themselves.
LOVE is teaching one another things that help each other to be better.
LOVE is TIME. MAKING TIME to BE WITH and EMOTIONALLY STRENGTHEN each other.
LOVE is progressing spiritually and growing TOGETHER.
Love is much more than the messages that are screaming at us on social media and the news. The kind of love that we all CRAVE, is the kind of love that very few understand until deep tormenting suffering takes place. In all honesty, gifting someone with an act of TRUE love is HARD. It takes TIME out of your busy life and schedule, and it usually takes thought and preparation beforehand. It's not easy to truly offer the gift of love to someone who is different or suffering. But at the end of the day, true love wins and is the real answer to deep, lasting healing.
I recently received a comment on one of my social media posts in response to sharing some of my life on the farm.
"Farm life sounds magical!"
I chuckled to myself at that comment because my mind was automatically drawn to the not-so-magical aspects of farming. I'd hardly refer to mucking stalls, chasing goats that got out, waking up early to feed, and working with stubborn horses every day "magical." But it also left me in a reflective state of all of the joy that has come to me from living on a farm.
I have experienced greetings from the sunrise that feel crisp clean. I've absorbed golden summer evenings when the whole farm seems to glow. I've awakened to winter mornings where the whole world is blanketed in white and icy glitter fills the air and space.
I've spent rainy afternoons on my knees in manure aiding in a goat giving birth to a precious new-born, praying that they both might live despite the difficulty. I've cried along the riverbank in response to feeling God's deep love for me after a long week. I've witnessed miracles as I've watched the garden grow, and I've felt a connection with living creatures as I've trained and interacted with animals of all kinds.
I suppose with all those things in mind, farm life can at times be quite magical. It never ceases to amaze me the miracles that I witness every day on the farm.
One such miracle occurred a few months ago when I was feeling discouraged and frankly exhausted with the daily battle of fighting illness and attempting to live as normally as possible.
I was standing inside one of our large greenhouses one evening, taking note of all the little plants that were beginning to grow when I noticed a small butterfly fluttering its wings rapidly along the edge of the plastic covering the greenhouse. (For those of you who are unfamiliar with greenhouses; a greenhouse is usually a large half-cylindrical shape with one door on either end of the structure. Greenhouses are used to keep heat in so one can lengthen their growing season and begin planting even when it's still cold.) I noticed this beautiful butterfly fluttering its wings and mentioned it to my friend that works for us. He replied by telling me it had been there all day and probably wasn't going to get out.
Now, as someone who's heartstrings are easily pulled, for some reason my care for that butterfly increased and I took to the notion that I was going to get it out so it could live. I'd caught lots of butterflies in my backyard when I was a little girl so how hard could it be? My first thought was to cup my hands over it, catch it, and let it go as soon as I reached the door. Butterflies are less that submissive though, and although my attempt was sincere, it failed to succeed.
So I stood there, and I eyed it while silently coaxing it to calm down. After a while, it landed gently on one of the wood beams laid across the middle of the greenhouse. These beams are a little higher than waist high for me, and it wasn't too difficult to reach at the time. I somehow received the thought to just hold out my finger to it, and to my surprise as I did so the little butterfly proceeded to climb onto my finger. I didn't even know that butterflies would do that with a person! While my heart and mind were screaming with excitement I calmly ventured away from the edge of our little plant house and stepped slowly towards the door. All the while, the butterfly sat content on my finger. The moment I reached the door I stretched forth my hand and the little butterfly flew away with a sense of freedom blowing through its wings and gratitude soaring behind it.
I learned a lot that day about living creatures and how I truly believe that we can communicate with them in one form or another. It's almost like that butterfly could feel my intention that day and therefore trusted me to carry it to safety.
I also acquired knowledge that day about how God often works with us.
How often do we feel stuck, afraid, and panicked about life circumstances or experiences that are less than pleasant? And how often does God put forth His hand and pull us out of a scary and unknown place?
I often wonder why I felt the need to help something that was probably really insignificant in the whole scheme of things. It's just a little butterfly? Why would it matter to me? Similarly, all of us can often feel like we are small and insignificant in the sight of God. I would like to assure you that you are never insignificant in the sight of our Father. I cared about that butterfly. And similarly, He cares about you. He loves each and every one of us individually. Even if we often feel like an insignificant bug, to Him we are not. Each one of us has divine potential that is worth giving time and love too. It would do us well to remember that.
I often see myself in the place of that little butterfly. When I'm in the middle of pain from chronic illness or emotional turmoil, I panic with the realization that I "can't get out." That is, I can't get out by myself. I've often found that in those moments if I take time to be still, listen for the guidance of the Holy Ghost, and trust God's outstretched hand, He will very likely carry me to safety.
You see, God wants us to feel free, happy, and at peace. But life situations and the state of the world often discourage us from the good and the beautiful things that life is all about. So today, I'd encourage you to be still. Within all of the mess, and the chaos; and in the middle of all the pain and heartache that life has to offer, choosing to be still and take His outstretched hand is the tangible way to breathe in and absorb the good.
The reality of life is that no matter how bad it is, no matter what you've done, no matter who you are or where you've been, no matter how broken you feel, "His hand is outstretched still." (Isaiah 9:21)
This means that we can take His hand on a daily basis by aligning our lives with Him. This is done through mighty prayer, feasting upon the word of God, repenting every day, and striving to be more like him in word and deed little by little until we have come to a perfect knowledge of His goodness, mercy, and Being.
As we walk this journey of repentance, mercy, forgiveness, heartache, and healing, we can know with assurity that HIS HAND IS ALWAYS STRETCHED OUT to help us through. As we rely on that hand, we can quite literally be carried throughout hardships and turmoils just as I carried that little butterfly to safety. Know and trust God's intentions. He intends to love us and bring to pass our immortality and eternal life. There is no greater or hope-filled intention than that.
Take his outstretched hand. Know you are loved. And at the end of every discouraging moment, day, week, month, or year, remember that HIS HAND IS STRETCHED OUT STILL.
Many of us have heard of the theory of Pavlov’s Dogs, which teaches us the theory of Pavlovian Conditioning. In the 1890s, Russian psychologist, Ivan Pavlov, was researching salivation patterns in dogs in response to food. Pavlov predicted and was correct in the theory that a dog’s salivation increases as a response to food being placed in front of them. He later noticed that the dog’s salivation also increased as a result of hearing the footsteps of the person who was bringing the food to them.
This lead Pavol to a number of experiments that later proved that with a repeated conditioned stimulus, he could produce the same increase salivation in the dog. For example, when he produced the sound of a ringing bell to the dog, salivation would remain neutral, or stay the same. But after continuously ringing the bell right before bringing the food out, the dog’s salivation would increase at the mere sound of the bell ringing, even with the elimination of the food.
For a dog, food is an unconditioned stimulus, and salivation is an unconditioned response.
It happens naturally. So when you place a neutral stimulus in front of the dog (the bell), you get an unconditioned response (no salivation). But after repeated practices of the conditioning process (ringing the bell right before delivery of the food) you receive a conditioned response, (salvation from the bell, not the food.)
Let’s compare this theory of Pavlovian Conditioning to us, as human beings. For example, our need to protect ourselves from potential threats and dangers is an unconditioned response. It happens naturally. It’s hardwired in our brains and our muscles to be and feel safe. And if we find ourselves in a situation or circumstance where we feel unsafe it is an unconditioned response to remove ourselves from the situation or to apply the proper safety gear. This is why we teach our children to wear helmets when riding a bike or to look both ways before crossing the street. Because that is naturally the safe thing to do.
Staying safe is the right and proper thing to do in any dangerous circumstance, but that does not mean that we are free from Pavlovian Conditioning at times. So when something like the media or any leadership or authority comes out and tells us to “wear a mask” to protect yourself, naturally there are many who wouldn’t respond to that as a measure of safety at first, (because it’s a neutral stimulus). But after continuously producing information on mask-wearing as a form of “safety” we are naturally conditioned to comply, even if the information being produced is less than true. The mask then becomes a conditioned stimulus. Even if there isn’t a relation to safety from viruses by mask-wearing, we wear the mask and feel safe.
In the past three months, the world has been buzzing with information about COVID19. As a result, the whole world seems to be in commotion. Businesses are shutting down. People are now distancing themselves from their friends and neighbors. Our elderly loved ones are now dying alone, and those who are suffering from anything besides COVID19 are left to suffer by themselves. These are just the outward results of social distancing and the shutting down of America.
What we’re not seeing since this global shut-down is the increased use of pornography that destroys marriages and families, the increase of domestic abuse, and the increase of suicide rates because people were not built to live in eerie, lonely silence.
I understand the concept: we want to STAY SAFE. We have one global purpose under all of this bizarre behavior, and that purpose is SAFETY from COVID19.
So is what we’re doing really keeping us safe? Or are we simply conditioned to believe that all these rules and regulations are keeping us safe when in actuality, the government and the media have other intentions?
The intentions of the media and government are for you to study and come to a knowledge of the truth for yourself, but my purpose for this article today is to address and question the seemingly moral obligations we have to now wear a mask.
I am a devoted member of The Church of Jesus Christ of Latter-Day Saints. I believe in a living God and Savior who suffered and died to save us all. I believe we have a living prophet on this earth today. And I believe that the secret to a happy and joyful life is by having a personal relationship with our Savior Jesus Christ. And how do we do that? By learning all we can of His being and characteristics, hearing His words and counsel to us, and doing all we can to emulate Him in our day to day lives.
This past week, the Utah Area Authorities of the Church of Jesus Christ of Latter-Day Saints sent us all an email stating that they are now asking us all to “wear face coverings when in public,” and this short statement has left Utahns and other members of our church in an uproar.
Members who don’t want to wear masks are being ridiculed and blamed for further spread of COVID19, and members who are devoted mask-wearers are now pointing fingers and accusing non-mask wearers of the choice to not wear a mask as being immoral, or breaking covenants because we’re not being obedient to this new invitation for all to wear a mask. The overall feel of social media is now angry and accusatory because supposedly, our safety is being threatened if we don’t all comply with wearing a mask.
This article is not to generate more hate or anger amid the members of the church or to openly refuse any invitation that the general authorities of the church may offer us. This article is to point us in the direction that seems nobody has mentioned yet: and that is to our Savior, Jesus Christ; who is our perfect example for all life situations, traumas, or hardships.
As a devoted Christian, I know that Christ was never depicted in the Bible as one who would comply with social distancing or mask-wearing. Christ was depicted as a healer of hearts, wounds, illnesses, sins, and turmoil. Christ never avoided those who were sick or contagious, and He is often depicted in church videos embracing those who were burdened, touching the faces of those He was about to heal, laying hands on those who were suffering, and washing the feet of those who wondered if it was them who should be washing His feet. Christ went among those that society saw as “sick” or unfit to be among other people, and he dwelled with them and healed them.
Leprosy was considered highly contagious during biblical times. In fact, it was considered to be so contagious that those who suffered from it were often put in leper colonies where only leprous people could dwell so as not to spread the disease to other people. Does this not sound a lot like “social distancing?” And yet, Jesus never feared a single leper but instead touched them to heal them.
“And, behold, there came a leper and worshipped him, saying, Lord, if thou wilt, thou canst make me clean. And Jesus put forth his hand and touched him, saying, I will; be thou clean. And immediately His leprosy was cleansed.”
As Christians, are we not counseled in the scriptures to be like Christ and emulate what He did for others?
As someone who has suffered from a debilitating chronic illness for years and has spent those years interacting with others who suffer debilitating pain that is often ignored or downplayed by other people, I know firsthand the detriment of being left to suffer from illness alone. I know firsthand that loneliness will kill a person far faster than the illness itself.
I also know that the loss of HOPE greatly decreases one’s chances of beating any sort of chronic or terminal illness. I also have come to find that a single person that offers Christ-like love to someone who is suffering can produce healing effects as powerful as our Savior had and still has on his brothers and sisters.
But our government and the media don’t believe in “one nation under God.” They simply believe in one nation. And unfortunately, we live in a time where many of our religious leaders have forgotten where our power comes from and that as we live worthy to receive and practice priesthood power, we can use it to heal and serve those around us.
Jesus went against the grain. He healed others because they BELIEVED and had FAITH that He could, and similarly we can heal others as we believe, and obtain faith.
“And a certain woman, which had an issue of blood twelve years, and had suffered many things of many physicians, and had spent all that she had, and was nothing bettered, but rather grew worse, when she had heard of Jesus, came in the press behind, and touched his garment.
And he said unto her, Daughter, thy faith hath made thee whole; go in peace, and be whole of thy plague.” -Mark 5:25-27 & 34
Which part of those verses condemned her for touching his garment in hopes that she would be healed? Christ never condemned her. In fact, she was healed because of her great faith in Him. Similarly, Christ will heal us and help us to heal others as we lead with FAITH and leave no room for fear.
As someone who loves and sustains our prophets, I now feel deeply pressed to address the issue that one who chooses not to wear a mask is disobeying the prophet and church authority, and therefore breaking his or her covenants.
If there is any scripture outlining the covenants we make with God at baptism or in the temple that state that we are to obey every word the prophet states, then please correct me of my error. But I believe that our covenants state that we are to be obedient to our all-knowing, all-powerful, all-loving Heavenly Father.
Wearing a mask is a personal choice. It is not immoral to not wear one. It isn’t selfish to not wear one. And it isn’t an act of charity to sacrifice your health and well-being because people in authority have conditioned us to believe that we’re protecting others if we comply and keep our mouths shut. Our founding fathers would not suffer silence to be tolerated in a country that was built on freedom, one of our freedoms being freedom of speech. The scriptures never use the phrase "follow the prophet." We are instructed in the scriptures to follow Christ. Christ stated:
“Follow me, and I will make you fishers of men.” -Matthew 4:19
President Russell M. Nelson stated four years ago,
"In the coming day, only those men who have taken their priesthood seriously, by diligently seeking to be taught by the Lord Himself, will be able to bless, guide, protect, strengthen, and heal others." (April 2016 General Conference, The Price of Priesthood Power)
We are counseled to listen and take into serious account the things that leaders instruct us to do, but even Brigham Young once stated:
“I am more afraid that this people have so much confidence in their leaders that they will not inquire for themselves of God whether they are led by Him… Let every man and woman know, by the whisperings of the Spirit of God to themselves, whether their leaders are walking in the path the Lord dictates or not.” – JD, vol 9, p. 150
Later Ezra Taft Benson quoted J. Reuben Clark Jr. when he said:
“We need the constant guidance of that Spirit. We live in an age of deceit. “O my people,” said Isaiah in the Book of Mormon, “they who lead thee cause thee to err and destroy the way of thy paths.” (2 Ne. 13:12.) Even within the Church, we have been warned that “the ravening wolves are amongst us, from our own membership, and they, more than any others, are clothed in sheep’s clothing because they wear the habiliments of the priesthood.” (J. Reuben Clark, Jr., CR, April 1949, p. 163.)
Our prophet is a man to be respected as a prophet of God and I fully love and sustain him. With that said, our apostles and prophets have counseled us many times to seek personal revelation. To wear a mask or not is not putting my personal morality on trial. If the prophets or apostles advise us to do anything that is not backed up with scripture, it would do us well to fast, pray, and receive guidance from God himself via the Holy Ghost.
Even our beloved prophet Nephi, in the Book of Mormon, taught us the importance of trusting in God instead of trusting in the arm of flesh:
“O Lord, I have trusted in thee, and I will trust in thee forever. I will not put my trust in the arm of flesh; for I know that cursed is he that putteth his trust in the arm of flesh. Yea, cursed is he that putteth his trust in man or maketh flesh his arm.” (2 Ne. 4:34.)
The arm of flesh in our time includes government authority, media, medical professionals, sometimes church authorities, and ANYONE who isn’t promoting personal righteousness and following God before anyone else.
We now live in a time that teaches the exact opposite of what our Savior teaches us in the Bible and the Book of Mormon, and if you’re truly going to argue about “obedience to the prophets,” shouldn’t that mean all prophets that have ever lived; including those devoted and valiant men we read of every time we open God’s word?
I plead with you my beloved brothers and sisters in Christ: now is the time more than ever to seek for personal revelation. The more we talk to God, the more He’ll talk to us, and we’ll know without a doubt in our minds that it is Him who is speaking and not the thousands of other voices who are so much louder in our day.
Might I suggest that the solution to COVID19 is not mask-wearing and social distancing, but personal righteousness and repentance? This does not mean that if you practice repentance and personal righteousness that you are guaranteed freedom form Coronavirus or any other hardship. But it does mean that all sufferings that you are given at this time will be for your benefit, (D&C 122:7) and that God will not suffer your life to end before it’s time until you have finished your personal work here on the earth.
Repentance and personal righteousness are the balm this society so desperately needs. For when we repent of practicing the harmful traditions of men and instead practice those attributes of our Savior Jesus Christ, we are more inclined to serve, love, and live as He did.
Instead of letting society condition you to believe every rule and regulation that is robbing us of our freedoms, may we let God sculpt and shape us into the people that we must be in order to be protected and empowered during these calamitous times.
I may not be a mask wearer… but I am someone who loves God with all my heart. And I know that with choosing the path of God sometimes comes persecution and suffering for His sake. I’m not promoting wearing a mask, or not wearing a mask. I’m promoting personal righteousness, repentance, and personal revelation. If you wear a mask, then that's your choice and I will not ridicule you for doing so. But if someone chooses not to wear a mask, they should not be automatically shunned and mistreated because of it. I don’t believe that Christ would ever do that. Because I know my Savior, and His love for us and faith in His Father extends much further than that.
Or the modified version: Who knew that everyone would join me in isolation!?
My face in this pic perfectly illustrates how I feel about the current state of life and the world! Oh, the irony of it all for someone who is chronically ill!
I started taking small baby steps out of my house and living more like a "normal" young single adult about a year ago, and even then I found it terribly difficult to fit in and be "normal" after 3+ years of being mostly home-bound due to Lyme disease.
The truth of the matter is that when you have an illness of any kind (even if it isn't contagious) people don't want to be around you because it's completely unknown and very scary at times. I found it incredibly difficult to find a friend that I could really count on, my social life was non-existent for the longest time, and whenever I expressed how lonely or suffocatingly bored I was, nobody seemed to understand, and nobody wanted to understand.
So, there's a part of me that wants to say to everyone that "corona-virus is all in your head, you're using it as a crutch, you just need to stop being lazy, get a job, and do yoga and you'll be fine!" just like I was told by countless amounts of people. But, the truth is that those comments hurt and are completely false to those who are suffering from any severe illness.
So... I'd invite you all to take this as a time to instead be KIND.
Illness has a way of bringing out the pure selfishness in people, or the pure love in people. The good news is that YOU CHOOSE which one it brings out in you. I never had any "tips for isolation and quarantine" articles floating virally around the internet when I took my first steps into isolation. And so, with those lessons learned, my tip to you would be to use WISDOM at this time.
Isolation is something that will kill you long before the illness will, and many people that I've seen die of Lyme disease died because they gave up because they had nobody. Because fighting a battle without helping hands and a team of people that love you is very VERY difficult.
Remain close to those you love with all the resources we have at this time because that's what will get us all out of this place that we're in.
Sending you all love, hugs, and support during the COVID-19 crisis!
Comment below if you relate to this!
I call this little phenomenon of the chronically ill, "The Pain Cycle." Tell me if this sounds familiar:
You just got through your last pain flare, and things are looking up. Maybe you go a few days... or even a few weeks... or if you're really lucky a month or so with low pain levels, and then *BAM!* Right back down where you started with more of that familiar friend we call pain. Especially with Endometriosis, this is a hard battle for me because I can always feel a big flare coming a few days before and the fear cycle that accompanies this is very real.
I've done this for 5 years, and although I see much improvement the pain game is tricky, frustrating, and makes me worry seemingly endlessly!
So, if you have a friend who suffers from any form of chronic illness or chronic pain, compassion is key. The best thing you can do to help stop this cycle is to get them out of their head. Talk them through it. Go on a walk (even if it's short and slow). Listen. Be there. This is a normal thing to experience when you're chronically ill, and we simply need people to walk the hard road with us, ready to help when we fall back to another flare or let the fear of an oncoming one interfere with daily life.
If you find yourself in the pain cycle like I so often do, remember to ground yourself and stay present. Remember that your pain doesn't define you, but your resilient and enduring spirit does. Don't give up and remember that there is always hope and happiness ahead!
This is such a COMMON MISCONCEPTION about chronic illness!!
I am finding myself escaping judgment like this the more I discover healing and am able to do more things. But, for the first 3 years of my Lyme journey when I was home-bound and bedridden, I received many comments about how lucky I was to just lay around at home all day.
To this day, I still receive comments about how my illness gives me "so much more time." That's just simply not the case.
Whether you're chronically ill, or healthy as can be, managing time is something that everyone has to learn. And an illness adds extra to the list of to-do's and compels one to re-prioritize.
It's a DAILY, CONSTANT battle.
Daily routines that if I don't do I'll be sicker than I already am.
Chronic illness doesn't make life any easier just because I can't hold a full-time job or go to college full time. It's not a constant vacation, and it's not an excuse for me to be lazy. On the contrary, it often adds to my life because I have to work twice as hard to acquire QUALITY of life.
Don't assume that anyone's lot is easier than yours. Instead, offer compassion and love. I know I have it easier than some of my other chronically ill friends, but that still makes me journey hard for me. And through the hard, I'm learning how to ask for help and rely on God and the people who love we me the most to give me the daily love and help that I need. We are all learning how to do that, and we will be a lot more successful as we work to encourage and help one another through it all. Asking for help and not being able to do "normal" things is nothing to be ashamed of. My story looks different than the average young person, and that's okay. My job is to live life with this illness to the fullest that I can manage.
Comment below if you relate, and remember that taking time to rest and do treatment is nothing to be ashamed of!
It is one of those weeks where I feel the tired vibe very fiercely, and I've been praying hard lately for strength through the weariness.
I believe that everyone can relate to this in one way or another, so you would think that this isn't something that is commonly misunderstood. Everyone knows what it's like to be tired right!? Well yes, but there is a difference between being tired, and being BONE tired from fighting the good fight for years and wondering if you will ever have a month or a year free from the pain. I regularly have to remind myself that when someone tells me they are tired it is, more often than not, a cry for help.
I learned this week that there are simply times in life when sleep isn't necessarily the remedy for this form of exhaustion and weariness. Oftentimes LOVE is what can invigorate a wearied soul.
Never underestimate how far a phone call, a hug, a hand to hold, or a kind word can go to someone who feels weary. I will always be a firm believer that love conquers all, and so in our moments of pain or healing may we all be able to offer a healing hand to those who are incredibly "tired."
Comment below if you can relate to this form of being "tired" and what helps you get through it!
There are times when winter is reminiscent of being swallowed by a deep black hole. And if we're not careful, we may forget the light that's right behind the cloud cover.
I hold deep antipathy for darkness, and I often look up at the sky in the wintertime wondering if the bleak gray of winter will come to an end. It's common to hear talk of "winter depression" or "seasonal depression," but I almost never hear talk of what it's really like, or what it even really is. I wish I could say that wintertime was merely a battle with sadness, but I've found it's often much deeper than that, and the PTSD that comes from long months of illness is as real as the PTSD that comes from fighting in a war. In all reality, this is a war for those of us who push through winter with chronic illness, one heavy step through deep snow at a time.
Last year at this time my family was walking right into "The Lyme Flare of 2019." I took up my bed in February of 2019 with pain so deep and penetrating that I couldn't lay on one side of my body for too long without having to sorely role over to another side to release any pressure that was weighing on my pained muscles. I had been in this place many times before, but this time was a complete recession from how I had slowly been improving throughout 2018. Like falling down the stairs or off of a tall cliff, I looked up at this beast referred to as a "Lyme flare" that I was somehow facing once again and felt completely destitute and defeated.
At the time I had been struggling with piercing feelings of insecurity, worthlessness, and the fear that I will never be enough. I had been striving so relentlessly hard to work through life on my own, that my mental health had completely receded. I prayed for relief from the monsters inside me and instead of relief I was left to cope with physical pain and my ability to do anything removed from my grasp. And it was in this time-frame that I resolved to surrender everything to God and hope that by some miracle I could be pulled out of this darkness that swallowed me while I lay helplessly in a bed or on a couch. The "winter depression," as one might call it, was so heavy that I often felt completely paralyzed. I remember at this time that every time I could manage to glance out of a window my eyes would be met with gray skies and cold frigid air.
What I didn't know at this time was that this wintry flare that left me feeling completely lost and pained, ended up being one of the greatest blessings of my life, and resulted in one of the greatest lessons of my life.
Up to this point in time, I was living subconsciously as if I have to do everything on my own for quite some time. I'd never done anything half baked, and I'd always found myself meeting my problems and pitfalls with ambition and hard work. Unfortunately, there are things in life that one cannot possibly do on their own, such as facing monstrosities like Lyme disease, betrayal, or abuse, and I often found myself passing blame to myself for the misfortunes that happen simply as a result of mortality. I blamed myself for my negative feelings, and I numbed myself to my heartaches and hurts as a way to somehow prove that I was strong and that I could heal and survive on my own.
If there was anything that "The Lyme Flare of 2019" taught me, it was that I simply could not do it on my own. I had been driven to a place where burning over my pains with work and busyness was no longer efficient because my body would not allow me to. And as one can imagine, I faced my pains with the quiet allowance of feeling. It was excruciating. But with that, I learned about grace.
It was as if God had answered my cries for relief by giving me permission to stay in bed and sleep for a month or two. I felt His love and support even when all I could do was rest. And surprisingly, life went on. He took care of what I couldn't and I felt great peace and comfort that this was a time of RECOVERY, STILLNESS, and HEALING.
You see, we are not expected to pass through toil and trial on our own. And in a world where I have heard the phrase "God doesn't give you more than you can handle" run freely from the mouths of those who have yet to taste bitter cups in this life, I commonly assumed that there was something wrong with me because THIS was more than I could handle.
Lyme is more than I can handle.
Betrayal trauma was more than I could handle.
Watching parts of my family fall apart because of this disease was more than I could handle.
Living day, after day, after day for years watching my mother in pain and suffering that is seemingly endless is more than I can handle.
And the heartache that comes from isolation and loneliness is MORE THAN I CAN HANDLE.
The truth is that there are many times in life that God will give us more than we can handle and that is simply because we were not meant to handle it by ourselves. We were given grace, tender mercies, each other, and a Savior who loves us tremendously. So as we pour out our aching souls to Him, He gives us grace for grace, and mercy for mercy. Who knew that lying in a bed in debilitating circumstances could teach me that I am enough, that I don't have to "handle" everything by myself, and that just because I can't handle something doesn't mean that He can't.
So now I face this winter with similar anxieties, pain, and emotions boiling to the surface. I still glance out the frosted over windows to see bleak skies and frigid air. I still often find myself in deep weariness of soul because there are some battles in life that do not merely end.
The increase of symptoms and the seasonal depression can still weight heavily on my body and heart, but this year I fight with a changed perspective. This year I fight with quietly loud faith knowing that I am not fighting alone and that I don't have to face the scary aspects of life on my own.
The winter will always pass through where I am. The skies will always gather clouds and the storms with often rage. The cold will often chill us to the bone, and sometimes coats and scarves won't always be enough to warm our troubled hearts. But one thing I can guarantee is that bright blue skies will always appear again. Light conquers cold and dark. And there is often something beautiful awaiting us in the middle of these merely bleak or utterly terrifying winters of our lives.
The trick is to remember in the middle of them that as we strive, we are enough, we're not alone, and sometimes you can even find some beauty within the storm. For I always thought that snowflakes could turn out to be quite beautiful anyway.
God's grace can and does sustain us, and I pray for that as we persist through another winter.