Lyme disease can leave people feeling alone and abandoned.
Alone because no one understands. Even their closest friends and family members have trouble understanding.
Abandoned by the medical community. Lyme patients are forced to pay out-of-pocket for treatment costs, and in a way, forced to become their own doctors.
In many instances, symptoms like anxiety and depression are made worst based on the circumstances of living life with a chronic illness. It’s important to live without stress so that your body can heal. Ironically, it seems impossible to not be stressed, as long as you are severely ill.
It’s a cyclical battle that is truly torturing, and it affects the entire family.
Over the years, I’ve found it difficult to know how to include people in my story. To let them be part of my life. And to be a part of theirs as well.
People have often said, “Let me know how I can help.” However, it is hard to know how people can help. Especially with having moved a couple thousand miles from my hometown, there’s this stigma that exists. Like, “you made a bad decision for having moved.” As if my struggles with Lyme disease are of my own doing, because I chose to move away from the land I knew.
But do you wanna know something?
I moved away because I wanted to. Not to make things more difficult, but because my husband and I had an itch to be elsewhere in life and so we decided to do something about it.
I moved away because I’ve lived enough years on this earth to know that when a person desires change, they need to be willing make change happen. Willing to do what’s uncomfortable, unfamiliar and risky.
So we went for it. Despite the fact that I’d been recently diagnosed with chronic Lyme disease, and despite the fact we were pregnant.
And guess what?
Moving across country was worth it.
Sure, life since uprooting has only grown more complicated and chaotic. But it was worth it.
There’s always going to be challenges in life, no matter where you are, and there’s always going to be pros and cons too. I know for a fact that had we not moved, we would have been stuck with regret, wondering what we would have missed out on.
It’s amazing to look back on the two short years since moving to the Pacific Northwest, and think about the strong community of friends we have acquired.
We have a tightly knit support network.
These friends are my family.
They love unconditionally, serve humbly, give generously and support me in the ways they know best. They don’t ask questions, and if they do, they ask purposeful questions – as opposed the vague, non-committal, quizzing type questions I’d grown used to previous to having moved.
These everyday hero’s have influenced my heart in a way that is lifesaving.
I am forever grateful...
Are you seeing a common noun here, by the way?
Moms are amazing supporters.
Oh. My. Word.
I could go on!
I know I’m forgetting examples and stories. You guys – look at this list!
Not included are the men and women who have believed in my husband and made themselves available to supporting him, especially in recent months. Those who have encouraged him in his role as a husband and father. Who have given to me, by giving to him.
I am fortunate beyond words. I am taken care of, and my needs are being looked after.
Moving away from family and all that you know is challenging, but it doesn’t mean you have to live life alone.
I was talking with a friend recently about how I struggle with being relationally engaged. I have a lot of friends here, a surprising amount actually, for having lived here such a short time. But I don’t feel plugged in or invested in their lives.
I am on the receiving end far more than the giving end, and that is difficult. The truth is, I feel like a burden, or that my family is a burden, to everyone around us.
This friend reminded me that we are going through some exceptionally difficult things – that as long as she’s known me, our troubles have seemed to never stop.
She also reminded me that friendship means more than helping each other through life’s challenges.
It means supporting someone and loving them despite whether or not you think they deserve your support. It means spending time together, even if no words are exchanged.
In a way, I feel like friendship could be synonymous with health. Because it means I am seen. My burdens are shared.
I am being given hope each day that I don’t have to go through this battle all alone.
Dealing with Lyme Disease can be challenging enough based on the complex symptoms alone.
What makes it ten times more challenging, though, is the fact that (for most with Lyme Disease) our symptoms are invisible.
We try to describe what we’re going through, but the words get lost in translation as the hearer sees us as normal, healthy individuals.
How can we be understood? To our friends, the medical community, our own families?
If I were to describe to a healthy person what a day in my shoes feels like, this is along the lines of what I might say.
If you are healthy, and truly want to understand what Lyme Disease is like, I ask you to read the below when you have enough time to let the words register. Really try to enter this world for a moment.
Please know that none of these examples are exaggerations.
This is a picture into life with chronic Lyme disease.
I don’t even know what you said in full, the wind disrupted the sound waves as your words were on their way from your mouth to my ears.
“Slut village?” “This isn’t Slut Village?”
Whatever you said, it initially made me chuckle. Receiving catcalls and obscenities is something I’d expect in my college town. And something that did happen often while I was in college, not because of how I acted, or how I dressed, but because men are men and that’s all. Continue reading
A woman stands with an umbrella, rain steadily dripping above her head. She holds a sign: “My child, my right.” Pushing a stroller with two young ones, she makes her way closer to the front to hear the speaker.
A man in overalls steps in place to keep warm. He grins as we catch eyes. Passion emits from the microphone, and he is the first to applause. Continue reading
“You look more youthful.” The words hit me with surprise.
Here I was, gripping a beast of a camera, one on loan from a good friend. I wanted to cry with the pain its weight brought to my arthritic fingers and wrists. But instead, I beamed with happiness. A youthful sort of happiness, as my husband pointed out. Continue reading
Today, January 14th, marks the due date of the second baby my husband and I lost to miscarriage, now four and half years ago. Words fail to describe the existence of pain that still resides in my heart as a result from enduring such losses.
In remembrance of what today should have been, I’m publishing an old excerpt from my journal. Continue reading
You think it’s pretty crazy that it’s already two-thousand-and-seven, don’t you? You wish you could have accomplished more in this last year, but you’re sitting down with pen and paper, eager to write out a full list of all the amazing things you want to accomplish in the new year.
After an hour of journaling right before bed, your hand writing at awkward angles as you use your pillow for a desk, you come up with something like this.
When is the last time you cried? For me, the most recent tears came just the other night. I felt them creeping up, as my lips firmly frowned. I did not want them to take over, but they did. The wet droplets against my cheeks made me feel embarrassed, even though no one was around.
Not because I was crying, but because of what I was crying about.
You see, I was crying about Christmas cards. Continue reading
I am not the only person suffering from chronic Lyme disease. And chances are, I am not the only person you know who has it.
Have (or how have) you been touched by Lyme disease?
Perhaps you have a friend who has Lyme. Or a sibling, parent or child. Or multiple siblings or children. Perhaps you don’t know anyone personally, but have friends or relatives who do. Continue reading
I hate you, weaning. I never meant to meet you. Yet here you are. Making my child scream like he’s dying. Making my heart cringe like it’s dying too.
He wants his mama. But that’s not all, he wants mama’s milk. Just the way he always has. I have to teach him that mama can’t offer milk anymore. Mama is starting a new treatment next month and it just wouldn’t be safe. Continue reading