By Alex Laoch
I was so relieved when my Lyme treating physician told my parents, “Lyme Disease is the absolute worst! It’s worse than cancer. It’s worse than AIDS. Your daughter is very, very ill and has been for quite a while.”
It may sound weird to hear I was relieved, but I felt like someone finally understood how sick I was, took me seriously, and extended the empathy I so desperately needed and deserved.
This being said, cancer and AIDS are truly tragic diseases, and in no way am I discounting the pain and misery they bring upon people. I’m also certainly NOT saying Lyme disease is worse than either of them. I don’t know because I don’t have cancer or AIDS, and I’m not a doctor. All three diseases are incredibly tragic, and no one should have to suffer through any of them.
But I do have Lyme disease and other tick borne co-infections, and having someone finally give another voice to how terribly sick I was and standing up for me was deeply validating.
I wanted to muster up the strength to jump out of my chair and say, “See! I told you I REALLY AM VERY, VERY SICK, Mom and Dad! I’ve been trying to get you to understand this for so long!”
In defense of others, having been misdiagnosed with everything under the sun (Rheumatoid Arthritis, Fibromyalgia, IBS, and the list keeps going) for ten years, and subsequently having all the treatments for the misdiagnoses fail, I guess I can kind of see why some people doubted how ill I was or if I was even ill at all. I mean, I had gone to the “top” doctors for ten years, roughly 30 to 50 of them, and they couldn’t get me well, so something must not be terribly wrong after all. Plus, I looked fine on the outside.
Wrong. Dead wrong. . . to the extent I literally wanted to die. Every night, I prayed not to wake up. When I did wake up, I prayed for a car to hit me but for no on else to get hurt. I wouldn’t kill myself because I didn’t want to hurt people who love me. I just didn’t want to live. It’s not that I had a poor quality of life, it was beyond that: I was existing in pain and misery. From what I’ve read, heard and seen, cancer and AIDS are devastating diseases. So are Lyme disease and co-infections.
People with Lyme disease generally do not receive any or even near the level of compassion people with cancer or AIDS receive. And you know what? It infuriates and saddens me.
I don’t want people feeling bad for me as in throwing me a pity party. I want some compassion, some understanding, some empathy. I venture to say it would be more acceptable to take sick days or miss social functions if I had a different disease than Lyme.
Think about it: I’m flying on a plane to get Lyme treatment (why else would I be traveling, because even the thought of a vacation is taxing when you’re so ill). Someone near me is playing a movie on a device that hurts my ears (I have extreme sound sensitivity at times). How different would the response be if I said, “ Could you please turn that down? I’m undergoing cancer treatment,” versus, “Could you please turn that down? I’m undergoing Lyme treatment.” What about if I miss a social function due to cancer treatment versus Lyme treatment? And what about taking a sick day at work?
The toll Lyme disease takes on a person physically, mentally, emotionally and financially is horrid. Many people with Lyme commit suicide or want to die to escape the misery that encompasses them.
So the next time someone tells you they have Lyme disease, I hope you realize it is a horrific disease in its own right, and you extend the same amount of compassion to him or her as you would to a person with a different chronic illness. Or the next time you hear Lyme disease brought up during a conversation, please take the opportunity to share what you’ve learned with someone. A little compassion can go a long ways, especially when someone is suffering.