Someone you know is sick with Lyme disease. It could be a friend, a family member, a significant other or just an acquaintance. Whoever it is, you have questions. Or maybe you don’t, but you want a better idea of what the heck is going on. This article will hopefully offer some explanation, and can probably be applied to a variety of chronic illnesses. I’m not a doctor (disclaimer!) but I have personal experience with many “invisible” illnesses and Lyme (unfortunately).
Lyme Connection, a 501(c)(3) nonprofit organization (formerly Ridgefield Lyme Disease Task Force), works with the community about prevention and early diagnosis and support patients. The goal is to connect patients with compassionate care, helpful services and fellow patients. Lyme Connection’s mission is to make the community a healthier place by preventing tick-borne diseases and supporting patients and their families throughout their illness. Everyone needs encouragement and validation to make it through what is often a daunting challenge.
Please read on for the 10 things to know when someone in your life has Lyme disease.
1. Lyme disease is an invisible illness. What does this mean? When someone with Lyme is feeling absolutely horrible they are likely looking no different on the outside than they do on one of their “really good days”. This disease usually does not present itself with obvious visible symptoms. Normally you will not see a Lyme patient with their legs wrapped up in casts or with huge bleeding gashes on their bodies. Our symptoms tend to be more internal. Things like extreme fatigue/weakness, joint and muscle pain, dizziness, nausea, anxiety and brain fog aren’t necessarily easily detected just by looking at a person. It can be hard to understand how a person can be feeling so horrible when they look “fine”. Often times, they even seem to be acting fine!
2. Lyme patients quickly become amazing actors. When you’re sick with a cold or a flu for a couple of days, maybe even a week, you likely spend that whole time in bed or on the couch, maybe complaining about how miserable you feel (definitely not venturing out in public and likely not even leaving your bedroom). You probably tell your friends and family you’ll see them when you’re feeling better and you feel too horrible for company right now. Simple tasks like food preparation and household chores are put on hold. Basically, life is put on hold. Which is acceptable when it only happens for a week at a time, probably once or twice a year. Everyone gets sick, it’s fine, it happens, it sucks, but life goes on.
But, when you have a chronic illness, you often wake up everyday feeling like you have a horrible flu and the worst hangover of your life all rolled into one dreadfully uncomfortable package. As easy as it would be to stay in bed and not talk to anyone or do anything, you know these symptoms aren’t going to just disappear tomorrow or even next week. This means you try to push yourself as much as you can to do normal things. Some days you might not be able to push much more than making yourself dinner. Other days you might venture out to the store or to see a friend. Your friend might tell you how great you look. “You must be feeling better! You’re out and about!” You’re conversing and laughing and you look like you’re feeling fine! Unfortunately a lot of the time, it’s all an act.
When you’re chronically sick you learn pretty quickly that wallowing and complaining about symptoms and refusing company leads to a very lonely and isolated life. People quickly get tired of hearing you complain about how horrible you’re feeling, and you quickly get tired of being stuck in bed with no company. So when you can, you get up, you go out, and you put on a show. You smile and you laugh and you act like you aren’t feeling any pain or discomfort at all. It is difficult and heartbreaking to have to live your life “pretending”. It’s also extremely exhausting. And sometimes in the middle of this act symptoms get worse and you find it harder to appear normal.
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3. Symptoms can come on slowly at times, but other times quickly and suddenly. One minute you feel okay, then all of a sudden it seems like the floor has been ripped out from under us. We might need to sit or lie down immediately. We might even pass out. This can be confusing for people that aren’t sick. Just a second ago we were okay. What happened? At times, symptoms really do come on very quickly. It’s the nature of Lyme. It happens. Other times the person wasn’t feeling well at all to begin with but was doing a pretty good job of acting fine (see point number 2).
They might have been feeling pretty horrible, but not SO horrible that they couldn’t fake feeling okay. Then, their symptoms got worse and it seems like they went from 0-10 in a few minutes. A lot of the time though, what is likely happening is they are going from a 7-8 out of 10 to a 10 out of 10 in pain/discomfort. They have just learned to hide the 7/10 well. 10/10 is much harder to hide, and quite frankly when you’re in this much discomfort, acting fine takes a back seat to getting yourself and your body stabilized.