Chronic Lyme Disease: Let’s Start Talking

It’s a constant ache. A persistent ring. A breathtaking stab. An unrelenting throb.

The pain that is endured by many is simply unending, despite the amount of pain killers or natural remedies that are tried.

Chronic Lyme disease victims endure pain that is more than just physical, though the deteriorating physical strength that one withstands is often easier to describe.

It’s constantly lonely. Persistently sad. Breathtakingly upsetting. Unrelentingly frustrating.

The pain in a Lymies head is sometimes even more devastating than that of the physical side of this tragic disease.

The Lyme community lost another warrior this past week. I never knew her, I saw her posts shared occasionally on Facebook, admired her bravery for posting such graphic information, and am inspired by her fight. She did her very best to bring awareness and a light to the Lyme life. She was a true fighter and she made a difference in many lives. Rest in peace, angel Kacey.

This disease should not take lives. This disease should not go undiagnosed for 40 years. This disease should not paralyze people. This disease should not be misdiagnosed 120 times. This disease should not cause people to drop out of school. This disease should not leave people financially struggling. This disease should not cause doctors to lose their licenses. This disease should not be under researched. This disease should not cause as much pain as it does.

But, this disease is all of those things.

This disease needs to be talked about. This disease needs fundraising campaigns. This disease needs three day walks to find a cure (I’ll come up with a name, for anyone who wants to help put a fundraising walk on). This disease needs to be known about. This disease needs to be understood. This disease needs a cure. This disease needs doctors who will not get put in jail for helping innocent victims. This disease needs to be put in its place  and never get out of control, again.

And, this disease has none of those things.

This disease?

Chronic Lyme Disease.

Let it be known that I’m in constant pain, some days worse than others, but nonetheless it is constant. I don’t think any Lymie would’ve ever imagined that they’d be in the position that they are. I can tell you right now that I never thought that I would spend hours on end in my bed watching Netflix, that I would end up taking a gap year from college, that I wouldn’t be able to go for a run whenever I wanted, that I wouldn’t remember 75% of the last few years. I never thought that I would want to bring awareness to something so badly.

73_300000316x316_2xIt is inevitable for people to disregard a disease that is not recognized by the leading national health institute in the U.S – the CDC. However, there are over 300,000 people who have Chronic/Late Stage Lyme Disease in the United States, and if you were to ask any one of these people what a mess it is to have to deal with this disease, every single one will tell you that it’s complete chaos, it’s heartbreaking, it’s expensive, it’s tricky, and most of all it sucks. So, why is it ‘illegal’ for doctors to help us? Why is it so complicated to figure out what helps? Why is it so expensive to treat?

Chronic Lyme Disease is no joke, and yet the CDC makes us, the victims, feel like mimes that nobody understands.

Personally, I would feel just a little more confident in my healing process if I knew that Chronic Lyme was acknowledged by the CDC. I’d feel a little better about my situation if I knew that the CDC let down their current definition of Lyme and allowed insurance companies to help with the financial side of things. (Pardon my french, but it’s a hell of a lot of money to treat Lyme; from finding a doctor who can actually help to trying many medications that aren’t covered by insurance.)

Lyme disease needs to be talked about. So let’s start talking.

Xoxo,
Elise Hendrickson

“She is tossed by the waves, but does not sink.”

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