Today someone asked me, “What’s the worst part about having Lyme Disease?”
I paused as a galaxy of thoughts shot through my brain like a meteor shower.
The worst part?
You mean besides being in extreme pain 24/7 and having to learn how to hide that from the public eye? Could it be the constant migraine headaches, or the sensation that my muscles are literally on fire? How about the inability to concentrate?
Imagine searing bone pain. Feeling like you’ve got the worst flu in the history of ever. The inability to have a normal body temperature. You either feel hypothermic or like you're living in the twelfth realm of Middle-Earth Mordor.
Then you have unexpected weight gain or loss because your own immune system has turned against your thyroid. There are lumps just below the surface of your skin that burn like a bee sting if they are touched. Hugging someone can be excruciating. Your internal organs ache as though you’ve been brutally beaten.
Imagine exhaustion such as you’ve never experienced before. It’s like cement blocks, weighing down your limbs. Mere walking is exhausting. Now imagine that feeling when you’ve just come out of surgery and the anesthesia hasn’t worn off yet. You struggle to focus, think or remember. Yesterday is a blur. Otherwise simple activities; reading a book, cooking a meal or driving a car prove impossible for you.
Don’t forget that you are suddenly allergic to nearly every food and chemical out there. Going into public places poses a risk to you. God forbid you should run into anyone who is sick, because your immune system's function is no longer at full capacity.
Now picture another 10-20 symptoms on top of that.
Then, imagine losing your job and your ability to make a living. Your home, and everything you once loved about your life is all at risk—because you can no longer function. Imagine being isolated and confined to your house, for years. Imagine no longer being able to go anywhere except an occasional trip to the grocery store; attend gatherings, parties or events, travel or essentially “have a life.”
Then there’s the emotional aspect of Lyme disease. Feeling so misunderstood and judged that you want to disappear. I’ve actually had people say things like “Well, there must be some hidden sin in your life that is making you sick.” One woman, after asking me if I was cheating on my husband went on to say, “Well, if you don’t know the sin that is making you sick and making God punish you, you’re just not looking hard enough.”
Some people don’t want to hang out with me for fear they will “catch” Lyme. Rather than educate themselves, they choose to shun me. I’m rarely invited anywhere, to anything. Most people have stopped visiting. It’s easy to feel completely forgotten.
After my initial diagnosis in 2005 I remember thinking, This is great. I have an infectious disease and there are antibiotics to treat it. This could all be completely reversible. There’s a name for it. There’s a treatment for it. In a few weeks, I’ll get beyond this!
Here I am 13 years later and I still require treatment to stay alive, and after all this time, some of my own family members and friends still don’t believe me.
“You’re not sick,” they glibly say. “All that’s happened is you lost some hair and gained some weight. Big deal!”
You may drop your pride and ask for help, hoping against hope that if you just explain yourself better, they might understand your desperate plight. Yet because you haven’t been diagnosed with cancer or some other horrible disease that is widely understood, coupled with the fact that you don’t “look sick”, they don’t extend a hand to help. They are committed to misunderstanding, making you feel even more alone if that’s even possible. Some people even tire of your battle and abandon you. Those that don’t, may insinuate that you’re depressed; that you need to exercise or get out more, or just take a pill and "get over it". Occasionally, you can go out for a social event; or maybe you are well enough to get on a plane to visit friends or family in another state. You’re even heard laughing sometimes, so, what’s the big deal? Everyone gets tired now and then and has a bad day, right? Right?
Except you now have a bad day, every day of your life. And your bad days aren’t just about a sore body from working out or getting over a cold or the flu. Daily, every organ and system of your body malfunctions and affects basic bodily functions that others take for granted. Things like, being able to breathe, go to the bathroom, or stand up for more than a few minutes at a time are...like climbing Mount Everest.
True some days are better than others, but symptom-wise, none of your days are great. You seldom, if ever, awaken with energy; pain is your daily companion, and trying to remember yesterday is impossible. Other symptoms come and go, and they vary from day to day, or month to month, in their intensity. But they never go away. Never completely.
So, you’re left in this war and you’re praying to God you’re not alone in it.
Thankfully, most of the people in my little world have shown their love and support in amazingly generous ways. I have an awesome support system, but many just like me do not. I pray for them and I hope you will, too.
So, what’s the worst part of this evil disease? For me, it’s none of the above.
The worst part, for me, is trying to convince another person that they could be just one tick bite away from getting Lyme.
Try telling the scoffer that Lyme is the fastest spreading infectious disease in the USA. Try not to lose your mind when your loved ones won’t, for whatever reason, use tick repellent when they go into the woods or grassy areas. It’s like believing that car accidents only happen to other people and the foolishness of that thought process is of grandiose proportions.
Lyme disease is a tsunami and it’s heading your way. I’ve got a higher view than you. I've got experience with these storms. You’re at sea-level and I’m a helicopter pilot. I’m lowering the craft and reaching out my hand to you. I’m pointing out the impeding danger. I’m offering you an escape, trying to save your life and you’re in denial that it’s even there much less that it is going to mow you down. You and your children can be saved but you behave as if it’s all some sort of joke.
In my mind, that’s utter hell because I can prevent you from going through the infectious equivalent of Cancer, but you’re ignoring me. Please, I beg of you, stop the madness!
It’s not that hard. Just use tick repellent. Check for ticks and know the warning signs.
And please, listen to the Lyme Warrior. Stop judging that which you don’t understand. Simply standing with the broken and saying “I believe you.” can change everything for someone like me.
Thanks for reading. xo