What It's Like To Have Lyme Disease
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Health and Wellness

What It's Really Like To Have Lyme Disease

You know you are a Lymie when you spend more time talking to people on Facebook than your own friends or family.

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What It's Really Like To Have Lyme Disease
Alexa Malloy

Lyme disease is a topic not really understood by anyone, besides those who have it.

My 12-year-old, country-loving self would ignore my mom every time she would say check for ticks. I mean, let's be real -- I didn't think Lyme disease was a big deal. Oh well, a bug bites you so you pull it off and go back to chasing your best friend in the yard. If only my 12-year-old self could have seen what would happen in the next 10 years.

I would have never thought my body would be plagued with the most disturbing symptoms in the world that no doctor could figure out.

From numbness, Bell's palsy, tingling, muscle pain, nerve pain, eye floaters, spasms, psychiatric manifestations, dizziness...the list goes on. I was truly convinced I was alone in this disease until I found a support group — not only one but like eight — with thousands and thousands of people in it. Those thousands and thousands of people were just like me and I knew I wasn't crazy. If you ask every Lymie, we have the same story — it was next to impossible for us to get diagnosed.

Once I was diagnosed, I was so pumped until I realized that healing takes time. A LOT of time and effort. That is something that is so hard for those suffering because they just want it all to go away. We sit here and grieve our old life like any other illness out there. For them, it's ok to mourn but for us, it's not?

We are considered annoying or crazy.

The number of times I have been asked "you aren't better yet?" like I WANT to be sick like this. It's hard for us to fathom all the supplements, different treatments, and time that has passed and we still aren't better. I understand it's hard for the people surrounding us, but trust me, it's hard for us too. There isn't one magic pill that we can take or there isn't a set treatment that is guaranteed to work because every case is different.

You know you are a Lymie when you spend more time talking to people on Facebook Messanger than your own friends or family.

It's nothing against them, it's just hard to understand. The comfort of having a friend who gets it despite, being on the internet, is relieving at the time. It stops the terrible anxiety and panic we face. The symptoms are crazy and it may be hard to believe but it's REAL. And this is something that makes it hard for those suffering.

We aren't asking for sympathy, just a little empathy. Most of us have developed social anxiety because "WE LOOK SO GOOD" to others, but inside we are crumbling. It took many naps, supplements, pain med checks, and breaks to get to the store for that one extra supplement you were missing or that one detox drink that you desperately needed during a bad "herx."

I fully will admit that I dodge people in the store in fear of them seeing me and then getting mad at me the next time I'm out. Or because I'm ashamed that I'm sick and it's too tiring to keep explaining that I'm not better when they don't want to hear it anyway.

But anyway, you probably don't know what a herx is.

In simpler terms, it's hell on earth for someone battling Lyme. It is when they have been treating/react to something and the die-off symptoms are too much for the body to handle. It's important during these times to flush that crap out.

"But I saw you at the store yesterday and you were fine. Why can't you go to yoga with us today?"

Statements like that make me never want to leave my house. Prior to this disease, I did anything and everything and then some. Now I'm hurting, I'm struggling and I need to back down. But at the same time, I don't wanna lay in bed and rot and destroy my mental health so yes, I'm going to go to the store and get that celery for my juicer then go home and nap before I can make it.

It's exhausting and every day is unpredictable.

We don't know what symptoms are going to attack us the next morning. Will it be more tolerable ones or the ones that shut us into our house? We shouldn't have to pick or choose what symptoms we'd rather but that's life right now.

I never get ready anymore because it takes too much out of me so I am starting to feel ugly. I have to admit that there are days I just get dressed up and put on makeup to drive in my car! Or there are days when my arms are too heavy to do my hair so I leave it a mess in a bun or throw on a hat.

Why can't anyone just come and give me company? This is something I struggled with understanding because I was always there for everyone else — now I need the help. I had to realize that people have their own lives and do their own things and that's ok. This disease will just help show you who your true friends are who are there with you at your worst instead of at your parties all the time.

Our life is different now and if we break down, we break down. That's OK.

I'm on a different path and my life is at a standstill right now. But this journey has taught me plenty of life lessons. Big ones, too. Lessons I didn't think I needed to know. I will forever be grateful for the little things in life once I'm healed. Like the ability to go outside and see the bright sky that isn't filled with my millions of floaters, or to simply text up a couple of friends and ask if they wanna grab an iced coffee and go on a walk or simply just being in a body that doesn't torture me on a daily basis.

This disease sure as hell humbled me in a crazy way.

I turned to God to help heal me.

I turned to myself and I found how much I truly love who I am.

A Lyme friend once said to me. "This life isn't "our" life. It's God's plan for us. Whatever that may be. So we can learn the values we need in order to make it back to him."

So before you open your mouth or think you know what someone is going through. Consider the things you hide from others in fear of being judged.

If you're struggling with a chronic illness, I hear you. We'll get where we need to be, someday — together.

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