1. Lyme disease is an invisible illness.
What does this mean? It means that 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) doesn't present itself with blatantly obvious visible symptoms. Normally you won't 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! Which brings us to point number 2.
2. Lyme patients quickly become amazing actors
Let me explain. When you're sick with a cold or a flu for a few 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. 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.
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, if that. 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. This often leads to point number 3.
3. Symptoms can come on slowly at times, but other times quickly and suddenly.
Sometimes, we are feeling okay and 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.
4. Lyme treatment requires a special diet.
When in treatment for Lyme disease there will likely be a laundry list of foods you need to avoid. If you've ever eaten with someone with Lyme, you've probably seen this first hand. Most of the time we need to adhere to a very strict, very healthy diet in order to limit inflammation and toxins in our bodies. We have enough of these to go around already from the Lyme and co-infections! Normally our diets consist of avoiding gluten, dairy, and sugar. Often times we have other sensitivities to add to the mix like soy, corn, eggs and nightshades. If it's annoying for you, take a moment to imagine how much more annoying it would be if you had to stick to this boring diet 24/7. Everyday. And be feeling like complete crap while doing it. Be thankful you're able to eat what you want and feel fine for the most part.
5. Lyme treatment causes something known as a "herxheimer reaction".
Or a "herx" for short. Similar to how chemo makes a cancer patient feel worse, when someone with Lyme disease takes antibiotics, anti-microbials or anti parasitics that cause a large amount of die off, this releases a huge amount of toxins into the body. This basically results in all of our regular symptoms being amplified as our bodies become burdened with trying to effectively eliminate these newly circulating toxins. Often times our bodies are so overburdened that they are not efficient at detoxing these toxins well, so it's a difficult process, and definitely not an easy one to endure at all. Unfortunately, it is often necessary to push through this uncomfortable period in order to make improvements.
6. Many Lyme patients are not well enough to go to school or work.
This doesn't make them lazy or unmotivated. When you are so sick that even simple tasks like showering and preparing meals is extremely difficult, school and work is out of the question. This is something I've dealt with personally, and even more so in the last year. I have had so many people tell me "You are so lucky! I wish I could stay home all day and sleep in and not go to work or school!" This literally makes me want to scream. I promise anyone who thinks it would be "fun" to be stuck at home chronically sick, without any obligations, is completely and totally wrong. Sure, maybe if you were feeling nothing more than a little under the weather, the first few weeks it would be nice to relax a bit. Then you'd probably go a little stir crazy. You'd be tired of boring daytime TV and hearing about everyone's eventful days out in the real world. You'd want social interaction. You'd want to leave your house! Now pile on top of that the fact that most of the time when someone with Lyme is stuck at home they aren't just feeling "slightly under the weather". They are feeling like death. Sometimes, the simple task of breathing feels impossible. This is honestly not an exaggeration. This kind of sick doesn't feel the same as a simple cold or flu. It feels like torture. Please do not minimize our suffering by calling us "lucky". Nothing could be further from the truth.
7. There is no "magic bullet" or quick fix for late stage Lyme disease.
You might be wondering why your loved one with chronic Lyme is STILL sick. I mean, it's been months, years even! Why isn't the treatment working? Shouldn't they be cured by now? The truth is there is no quick fix for those of us who have late stage Lyme. Things might have been much different for us had we been diagnosed and given proper treatment at the beginning of our illness, but the Lyme has now had months or years to run rampant throughout our bodies and it has no intention of leaving quietly or without a fight. I personally was sick for 8 years before I was diagnosed with late stage Lyme. I have been in treatment for about 9 months and have only seen minor improvements. But looking at the big picture, 9 months isn't such a long time when it took my body years to get to this state. Another thing that comes into play here is no one treatment will work for everyone. Each Lyme case is unique and will respond differently to different treatment options. Often times a Lyme patient will need to try several treatments, even several doctors or practitioners before they find one that allows them to make considerable gains. This process most definitely tests our patience. It might be testing yours, too. Again, it's important to remember that however frustrated you are getting with the lack of progress a friend or family member has had, your loved one is likely feeling 100 times more frustrated, and even disappointed in themselves for "not being better yet". Try to be patient and reassuring, as staying hopeful and persevering when nothing seems to be working is difficult, but absolutely necessary.
8. Lyme disease treatment is extremely expensive, and likely not covered by insurance.
The problem with Lyme disease, is that standard treatment options are geared towards those that catch it within the first few weeks of symptoms. In most of these cases, a few weeks or few months of antibiotics are all that is needed to regain health. These short term treatments are usually covered by insurance. When Lyme disease becomes late stage however, treatment is much more complicated. A few weeks of antibiotics will not even come close to curing the patient. Furthermore there will likely also need to be adjunctive treatments added to the patient's protocol like vitamins, supplements and herbal remedies. When it comes to late stage Lyme we have to pull out all the stops to get better. Sometimes this means traveling to doctors on the other side of the continent, maybe even the world. Or trying new cutting edge treatment options that are pricey and paid for out of pocket. This is a bit of a nightmare for us, as we already have the huge burden of failing health to carry, and don't need the added stress of coming up with enough money to get better. If you want to help your friend, offer to host a bake sale or fundraiser to help raise money for their treatments. It will probably mean more to them than you know.
9. Lyme disease can be extremely isolating.
When you're chronically sick, you often miss out on a whole lot. Little things like parties and get togethers. Big things like graduation and vacations. It's hard, it's heartbreaking, and it's difficult not to feel extremely alone at times. If you have someone with Lyme in your life you've likely witnessed them canceling plans because they were too sick to attend. This might have been annoying to you, but I can assure you they felt completely horrible about it and wish more than anything they didn't have to cancel on you. If your friend with Lyme is struggling to get out, offer to go over and visit them, or to pick up some groceries or Lyme-friendly take-out for them. You could even go over and cook a few meals to make the next week easier. Another way to show your support is to help them advocate for better awareness, so it's not such a struggle living with a disease so many know nothing about. Reach out to them. Tell them you're there and want to help. Chronic illness is uncomfortable and difficult for all involved, even messy at times. Sometimes people don't know what to say, and so they say nothing at all. I can almost guarantee that the sick person in your life would rather receive an awkwardly worded message from you telling them you're thinking of them, rather than nothing at all. Try to put yourself in their position. If you found yourself sick, would you find it easier to have friends who at least tried to understand, or who just ignored your situation completely? Maybe you've decided you'll just wait to see or talk to them until they're feeling better. Unfortunately, it could be a while. Make an effort to make it happen sooner rather than later. I promise, it will be appreciated, and it will show them that you are one of the few who doesn't abandon your loved ones when times get tough. That makes you a fantastic friend and an amazing person. Hold that title proudly!
10. We are just regular people too, this can happen to anyone. Get informed and be compassionate.
Before I got sick, I completely took my health for granted. It just wasn't something I ever gave a second thought to. Sure, you hear about people getting cancer, getting scary rare diseases, going through tragedy etc. etc. But that kind of stuff just always happens to other people. Never to you, right? The truth is Lyme disease (and any chronic illness for that matter) can happen to anyone. No one is immune. Sometimes it's easier to just put this kind of stuff to the back of your mind and not think about it. That way you don't have to deal with it. But what happens if one day you find yourself or someone close to you suffering from chronic illness? Would you not want people to at least try to take the time to get informed, understand to the best of their ability, and do what they can to make it easier on you? Practice patience, compassion, and empathy not just when it comes to dealing with the person you know that has Lyme, but in all aspects of your life. These traits are so important and when you have them you become an invaluable friend and person in people's lives.
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