Finding + Creating Your Own Best Self While Taking On The Setbacks Of Lyme Disease. A Story By Natalie Bettinelli
This is, Natalie.
The messy, unorganized, terrifying, sudden, unpredictable, and how-will-I-possibly-get-through-this moments are the ones that Natalie has chosen to face with more optimism and hope than it could possibly withstand, brining to light the people, places, and causes that are most important to her. That make her gears turn and mind fill with ideas on how we can all help make the world of Chronic Illness a little less lonely.
Yes, things will be challenging and the setbacks we face will look insurmountable, but when we take the highs with joy and celebration, and the lows with grit and determination, as well as a shoulder to lean on when things get a little too messy for one person, the haze around living with a Chronic Illness lifts, and we are better able to see not just ourselves, but the people and moments around us in a clearer and more hope-driven light.
Natalie, your story brings to light the importance of believing when all else feels impossible, and that is one of the greatest gifts you could give, so thank you for sharing with us your ups, downs, and all the messy bits in between. We're better off for it.
And this is her story...
I was diagnosed with Lyme disease on July 6th, 2016, just three short weeks after my wedding in Napa, California. In what seemed like no time at all, I went from being surrounded by friends and family and feeling overwhelmingly loved by the outpouring of support, to shocked, scared, lonely, confused, and very, very sick.
Looking back, I should have seen the signs and known something was up. We had a stressful year, but like anyone, I found excuses for my exhaustion and poor physical health. I blamed work, moving across the country, changing jobs, my long distance relationship, and training for my first marathon. I continued to tell myself to push through, that I would be fine. I put a smile on my face and gave myself the typical look myself in the mirror type of self-motivating speeches. I lived my life at such a high pace, always pushing through in an effort to accomplish more and “have it all,” that I missed big things. REALLY BIG THINGS. All of the signs were there, but I continued to ignore them. I didn’t listen to my body.
Following my diagnosis, I lay in bed for 6 straight months. I read every article, book, blog post, and medical journal I could get my hands on. I met people from all over the world, mostly through social media, and quickly became friends with other people in the Lyme and chronic illness communities who understood what I was going through. The Lyme community is wonderfully supportive of each other, but unfortunately, our society does not understand how to deal with or support someone with a chronic illness – something I experienced firsthand. We understand how to treat and relate to someone with an acute medical condition like a broken arm or the flu, and we understand how to deal, encourage, and support someone with a terminal illness like cancer or a brain tumor, but as a whole, we do not understand the in between. The illnesses that seem to go on forever. The people who complain about always being sick, see doctor after doctor, but have no answers. And to be honest, I was the same way. I mean, how can a reasonable person be sick for so long and not have answers or even a diagnosis? Aren’t we one of the most scientifically and medically advanced countries in the world? How could this be?
After a year of personally dealing with chronic illness, I now understand, yet still find it hard to explain. It is as if a dense fog crept into my life and made it hard for me to see the way ahead. As if someone took an eraser to all of my straight lines and re-drew them with no plan or destination in mind. As if someone borrowed my 120 count box of Crayola crayons that were perfectly organized by color and shade, dumped them out, broke a few, lost a few, and tried to place them all back without me noticing. It’s confusing and shady and totally not okay. Which is exactly how I feel about Lyme.
But what I realized is that crayons were not supposed to remain in their perfectly sharpened and organized places. Crayons were meant to be used, lost, melted, resharpened, and occasionally shoved up a kids nose. If they remained in their factory placed origin, they would remain purposeless. And that is not what I want for myself or for anyone else. Life is meant to be full of ups and downs. It’s how we grow, how we develop compassion for others, and how we get to know how strong we really are. The highs are elating and wonderful- full of celebration! And the lows are where we develop grit and where we are sharpened into stronger and kinder people. And I think, although painful, that is what we all really want. To find our purpose in life – to find and create our best selves.
Chronic illness is full of ups and downs. Growth and set backs. Celebration and heart break. Through all of it, I think the hardest thing for me (besides the always being sick thing) has been the complete lifestyle change. I went from being an extremely joyful person who bubbled over with energy, to someone who needs to take frequent naps and manage my relatively low energy levels on a daily basis. I went from being someone who loved running, yoga, and crossfit, to being thankful if I can get in a walk a few times a week. I went from having time and energy to spend with an abundance of friends, to someone who is drained easily by too much company and only has the energy to keep up a couple close friendships. I went from someone who loved dinners and drinks with friends and family to someone who now dreads meals away from home because of dietary restrictions and not wanting to explain why I brought my own meal. I went from someone who didn’t worry about a common cold or being around a sick kid due to my superhero immune system, to being a hypersensitive germaphobic. I went from someone who loved my job, to someone that can barely work two full days on a good week and constantly feels the stress of underperforming. My entire life changed so quickly and so drastically, I can honestly that the day I was diagnosed with Lyme disease marks a turning point that changed the trajectory of my entire life.
I have learned a lot throughout this process. I have been sharpened in ways I never thought I would be. I have more compassion for myself and for others – empathy I thought just wasn’t built into me. I used to be so hard on myself mentally and physically. I wouldn’t listen to my body as a vessel that tells me what I need and I was critical about my weight and my appearance. Now, I’m thankful for my body and the how hard it is working towards regaining my health no matter what shape or size it is and I’m learning to be confident in that. I have learned that when I am tired, I need to rest. When I am hungry, I need to fill my body with optimum nutrients in order for it to properly heal. And when I am upset, depressed, frustrated, or generally all over the place, I need to take a step back and reset. And most of all, when I experience breakthrough, I need to celebrate!
I have also learned to be kind towards others who are struggling. At some point in life, everyone goes through tough spots and I believe it is our job as a community to surround each other with support and love when those times come. I truly hope that no one around me ever feels alone and hopeless, especially when it comes to challenging health issues such as Lyme disease, depression, or other chronic illnesses. I am here to tell you there is a way, remission is possible, and there are people who DO understand. Please reach out. It can and will make all the difference.
I am not sure what lies ahead or how long it will take for me to go into remission. I am not sure if this is only a phase in my life or if Lyme is something I will deal with for the rest of my life. Regardless of how scary the outcomes may appear, I am determined to fight for the healthy and full life I deserve. I choose to have Hope. I choose to have Faith. I choose to believe in remission.
Want to follow along on Natalie's health journey and all the ways that she chooses to live a life more than? Just head to her Instagram!