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Feeling Like No One Is Listening to My Struggles With Lyme Disease

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Some days I feel like an alien on this planet.

I feel so much emotion, so much for my fellow humans, and I have yet to find another human that expresses and feels emotion as strongly and completely as I do. Having now been diagnosed with Lyme disease, after 10+ years of misdiagnosis and gaslighting, there is so much frustration and anger associated with every aspect of this debilitating disease.

I was so athletic when I was young. I never imagined I would feel as if I am living in the body of a 70-year-old while only 39. I never imagined those closest to me would not be able (and oftentimes, not even willing) to just hold me when I’m scared or tired. I never imagined I would feel so unsure of my own body, of my own physical being, when being told over and over again I’m just imagining these symptoms.

“Scans are clear, blood work looks great, nothing wrong with you. Sorry I can’t help!”


Why me? Why did I contract this disease that hardly anyone knows anything about, that doesn’t get treated until it’s too late in far too many instances, and that is so completely devastating?

Feeling discounted, like people think you are fabricating your illness, is so frustrating. I never imagined I would feel so completely helpless and tired and unwilling to fight any longer.

When you have a high ACE (adverse childhood experience) score and then contract a debilitating illness, it can be soul-crushing. The reasons my ACE was so high was because of terrible times in my very young life. Times I triumphed over and thought I would never have to deal with ever again. But this is worse. So much worse! I thought I had overcome the hardest times in my life, only to find out they were just the beginning.

Is life so cruel for everyone? Sometimes, my own life doesn’t even seem real. Incontinence at 39. ALS/MS symptoms without the scan abnormalities to “prove it.” Cardiac symptoms that make me feel like I could honestly and truly die, right where I sit. And it feels like no one is listening. I feel like I’m screaming underwater, invisible to everyone around me, like an alien on this planet. But I still have the privilege of walking around on this planet – even if it’s in a defective body where I’ve had trouble finding people who actually, truly care.

Humanity was broken long before I knew I was ill. Lyme disease only added insult to the injury.

So how does one find the inspiration to believe in humanity again when so sick? Because I’m having trouble finding it. When no one else understands why on earth you don’t have a single drop of energy to keep fighting when you’ve been fighting throughout your entire existence on this planet, it’s frustrating. When doctors, trained to help you, don’t know how to help you, it’s frustrating. When insurance companies won’t pay for your treatment, it’s frustrating. When you lose your job and have to retrain for another, all the while immersed in this illness, it’s frustrating.

And no one seems to get it. No one seems to hear you. No one seems to care. It’s beyond frustrating.

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Thinkstock photo via Veleri.

Originally published: June 15, 2017
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