Here's what sucks about having Chronic Lyme Disease:
1) CDC says it doesn't exist. And thus, to the world, it doesn't. Without information, acknowledgment, and visibility, those of us suffering from Chronic Lyme therefore don't exist.
2) Clinicians don't understand the disease, aren't trained to diagnose it and thus many of us suffer for months, years or decades without a proper diagnosis (wasting time, energy and loads of money on treatments that don't work). Lyme has been called the Great Imitator because it shows up in various ways and there isn't one specific set of tell-tale symptoms. I've mostly suffered from musculoskeletal symptoms, fibromyalgia, migraines, and chronic fatigue while others get cardiac and neurological issues. There is a lot of self-doubt that seeps in when we know we are sick and our bodies are telling us what is wrong, and yet we are told time and time again that we are fine. We trust our doctors but they are trained to read scans and blood tests and prescribe drugs. This is not something diagnosed through scans or blood tests easily, and a simple drug won't cure it (if it did then the pharmaceutical companies would be lining up). Which brings us to:
3) There is a pervading belief that Lyme is easy to detect and easy to treat. In reality, only 50% of cases begin with telltale bullseye rash, and Lyme tests are less than 50% accurate. Those of us who don't remember being bitten by a tick, are dismissed as unlikely candidates for Lyme (even though our pets test positive). The reason many of us become Chronic Lyme sufferers is because it goes undiagnosed for years and is left to wreak havoc on our immune systems. Cell damage is done. We feel like broken down junkers living on toxic fumes. Once all this damage is done your immune system has to be put back together again. A simple drug isn't going to do this. Lyme is not easy to detect or easy to treat.
4) There is little sympathy or empathy for those of us suffering with Lyme. We look healthy, don't lose our hair, can still get out of beds most days, and we should of course be thankful it isn't something truly serious like cancer or HIV. And of course we ARE grateful that it isn't those things, and we count our blessings every day that we only have Lyme Disease!! And yet, only having Lyme sucks. We were once healthy, active, productive people , and then suddenly and inexplicably we became sick, and that sickness lingered for years and left us inactive, unproductive, and damaged. We are no longer able to participate in our own lives. We let our family down time and time again. Work becomes something we used to do. Now, we crave sleep like a junkie craves a fix. We age 20 years in the first six months of this disease and feel trapped inside our bodies. Our brains seem to be on a holiday and there are days we can't remember our own home addresses or balance our checkbooks or read a book and make sense of it. And yet, there is a pervading belief that if we just ate right, exercised a bit, and 'wanted to get better' then we would.
5) Because Chronic Lyme is seen as nothing serious (after all, it's not like it's going to kill you), it is easy for others to dismiss it. Most people who don't have Lyme, have never had Lyme, and don't know anybody with Lyme basically shrug their shoulders when you tell them you have Lyme. They don't understand the devastation this annoying spirochete has created in your life. They also don't think it can happen to them, when in fact Lyme Disease is the fastest growing vector-borne illness with estimated 300,000 new cases each year. In comparison, there are 50,000 new cases of HIV infection each year and 230,000 people diagnosed with breast cancer (the most common cancer in women). This is not to compare, but to emphasize how quickly this is becoming of epidemic proportions. If you don't know someone with Lyme, you probably will soon enough, especially if you live in the Northeast.
Please, please protect yourself if you go outside where ticks roam. And please be vigilant with checking your children and pets. And please trust me when I say this is a serious and debilitating and devastating disease. No, it probably won't kill you, but that doesn't mean you want to risk getting this. Living with Chronic Lyme is no way to live. I honestly would not wish Chronic Lyme on my worst enemy.
6) Having Lyme feels like you are fighting a war and losing it every single damn day. You wake up exhausted and never feel revived no matter how much rest you get. You change your diet, but still everything you eat makes you sick. You try to exercise, but then find yourself immobilized for weeks. You try every treatment out there, and find yourself taking one step up, and four steps back. Some days you want to give up, but each morning you drag your body out of bed and pretend to be living, even though living sometimes means getting one load of laundry done, or binge-watching TV from your bed, or taking the dogs out for a walk or getting to a daily appointment with your health care practitioner/massage therapist/therapist. Just one task completed on your to-do list can feel like you've scaled Mount Everest. That's right, you have become a 90-year-old woman overnight, only you've seen 90-year-old women with way more energy than you have.
7) You watch everyone else living their lives, and this fills you with immense joy, because life is truly amazing and is meant to be enjoyed. But then you feel ridiculously jealous and petty because it's been a week since you left the house or felt like taking a shower and just checking email gives you a migraine. You can't remember the way life used to be when you were actively engaged in it, because now each day has become about making it through one hour at a time, the best way you can, using the tools of survival you've accumulated during this journey. You know others miss the old you, but then, so do you. You want to have a sense of humor about it, but hey, as an added bonus, the Lyme spirochete also messes with your moods, making you angry and miserable and blue.
8) You still have dreams and goals and you are not ready to give up the fight, no matter how much is stacked against you. But it is a fight you are more or less in alone. There isn't an Ice Challenge to raise awareness (the Take a Bite Out of Lyme tried but it just couldn't go viral) and nobody takes Lyme seriously anyway. That Housewife has it, but she's rich and just looking for attention, or so most people think. The CDC is dragging their feet on acknowledging the scope of this. There isn't currently enough money to be made so the pharmaceutical companies aren't getting involved. Lyme-literate doctors, the only ones who take you seriously, have to practice quietly and without public acknowledgment because they risk losing their medical licenses, so it takes you months to even find a doctor who can help you. Sometimes there's only ONE Lyme doctor practicing in your state and despite being exhausted and at the end of your rope, you have to drive hours for care.
9) You don't think people understand the risks of this disease and they probably aren't taking the necessary precautions when out hiking, camping, or just walking their dogs. Basically every single person you know who has a dog, has a dog who has been diagnosed with Lyme. This makes you realize how real and close and prevalent the risk is. On top of that, you know the reason Lyme is becoming chronic and harder to quickly cure with a round of antibiotics is because of the growing number of co-infections these ticks are infecting us with, co-infections that the basic Lyme test doesn't test for. You have a particularly nasty co-infection called Babesia that has been compared to Malaria and is often treated with anti-malarial pills. Sometimes you want to cry, and you do cry, when you think that you've been walking around with this nasty Malaria-like protozoan in your red blood cells for two years, and was expected to just 'shake it off.'
10) Mostly you are depressed that this Lyme epidemic is growing and that the public isn't really being told the truth. Every article you read online by reputable news outlets suggests an epidemic but then always relies on the the CDS's official position: that Lyme is easy to detect and easy to cure with antibiotics. You are heartened that Johns Hopkins has started research on Chronic Lyme but that means we are at least two years away from the scientific community acknowledging what those of us who have Chronic Lyme already know:
LYME SUCKS!!!!
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