*Originally published 7/16/20*
Recently WNBA MVP—and one of my Lyme heroes—Elena Delle Donne was forced to choose between her career and her health when non-Lyme literate doctors didn’t believe her Lyme disease was serious.
Unfortunately, this treatment from medical professionals is not new to lyme patients. We are told from the get go that it is “all on your head” and we need to “toughen up.” Although I am in a much better place in my healing journey than I ever have been in the past 8 years, it is still so unsettling and upsetting to see this happening.
Lyme disease in itself is hard to grasp since the bacteria is so advanced and leads to so many symptoms and complications. Throw in the horse of misconceptions surrounding it and you have a recipe for disaster.
I have spent that last 8 years of my life battling this illness so I’m calling myself an expert on the topic. I thought I’d share some facts since so many people have their own opinions on the topic regarding Elena’s health.
Did you know Lyme disease does not go away after 2-4 weeks of antibiotics? If that was the case, I would have been “better” in November of 2012. Instead, it is now July 2020 and I still find myself getting randomly paralyzed every once in a while, having tremors at times and having some other lingering symptoms.
If you see a tick bite or find a bullseye rash and get on antibiotics right then and there, 2-4 weeks if antibiotics may help—this is what we call acute Lyme. But many people aren’t lucky enough to find those things. In fact, according to a study done of 3,000 Lyme patients, only 40% saw a bulls eye rash.
If you don’t find the bullseye, it is possible that the Lyme bacteria can disperse through your body and go into “hiding” waiting to come out years later. This is what leads to chronic Lyme disease.
Once the infection is chronic, saying a person only needs 2-4 weeks of antibiotics and they will be “cured” is like saying someone with stage 4 cancer only needs 2 weeks of cancer and they are in the clear—it’s just unreasonable.
Did you know there is no cure for Lyme disease? So even if you do have acute Lyme and get the 2-4 weeks of antibiotics, the bacteria can go dormant in your system and it's never fully eradicated.
Also, antibiotics are not always the answer. I was on oral and IV antibiotics for about 5 years off and on. These helped up to a point, then I plateaued and it wasn’t until I started Chinese medicine that my true healing started. However, some of my friends did straight antibiotics and got into remission that way while others have done straight holistic approaches and had the same results. I know people who swear by bee venom therapy, ozone therapy, hyperbaric oxygen chambers and many more treatment options. Each person is different, each Lyme case is different thus each treatment is different.
For people saying that “Lyme disease isn’t that serious,” I say did you know that Lyme disease can kill people? I have been in this Lyme world for 8 years and I can’t count on my two hand how many people I have witnessed lose their lives to this disease.
When the infection has been left untreated for years and years, the damage to the body is sometimes irreversible. Lyme disease can cause something called Lyme carditis that leads to heart failure. I met a woman whose 2 year old son died from a heart attack due to Lyme.
It’s not even just the physical issues that can lead to death. The toll that living with Lyme disease has on one's mental health can be catastrophic. Not only can the literal infection lead to depression, anxiety and other mental illnesses—but the experience can exacerbate these illnesses.
Can you imagine what it’s like to be forgotten about by friends because you are too sick to participate in school, work or other events? Can you imagine what it is like to be told time and time again by the people who are supposed to “help you”—aka doctors—that you are crazy? Can you imagine what it is like to be a prisoner in your own body with no way out?
That is what it's like daily for a Lymie.
It is estimated that 1,200 people living with Lyme disease commit suicide each year.
I spent 6 months of my life getting periodically paralyzed from Lyme. Everyday I would wake up and be paralyzed—think about that. My first action every morning was pure fear because I physically could not move any part of my body—I sometimes could not even scream for help. I would have to just lay there panicking silently praying that someone would come to check on me and help. Can you imagine?
This was 2 years ago, when I was at my sickest but it still happens. In fact, last weekend I got paralyzed laying on a raft in my pool—luckily, my family was outside and helped get me out before I could have fallen off and drowned.
But “man Lyme disease is the most basic thing ever. Chill,” (@brandon_s_yo on Instagram).
Did you know that 64 pills a day can be pretty average for lymies—I even had some friends that were on over 100 pills a day. This isn’t something we do for fun. It’s something we have to do to LITERALLY survive. I have to set aside about 30 minutes each week to fill in my pill box for the week—and yes, it’s the giant granny sized pill box and at one point I had two of those babies filled to the top for one weeks worth of meds. This may seem excessive to some, but for us, we will do anything to get our lives back.
Did you know that living with Lyme disease does in fact make you high risk for Covid-19? The Lyme bacteria is called a spirochete for its spiral-like shape. This shape gives the bacteria the ability to “drill” into bones, muscles, tendons, nerves and even organs—like the heart. The response to this is hundreds of different symptoms—from heart palpitations, trouble breathing, fatigue, memory problems, tremors and many more. As we go through treatment, our immune system gets weaker and weaker—and our bodies start attacking themselves to try and fight off the war going on in our bodies.
Even when you are doing well—like I am—we are still at risk. Throughout this coronavirus pandemic I have been terrified of this virus. I’ve been saying I’m not worried about myself getting sick, I’m worried about getting other people sick. I am terrified of getting someone else sick and causing the torture that I have been through to another person and their family. On the other hand, I am terrified of getting sick again.
For the first time in 8 years, I feel like me. I have way more good days than bad, and my bad days aren’t even full days, they are more like bad hours—heck, the girl who couldn’t bathe herself because she was so weak and in so much pain 2 years ago is working as a fitness coach. But if I got sick, it could bring me back down to that terrifying place. I like to think I am a strong person, but having to go through all of this again could quite literally break me. So why would anyone force someone to have to go through this again?
T
hat is what the doctors on the WNBA board were trying to make Elena do.
People know one thing about an illness and call themselves “experts.” They are quick to make decisions and belittle the true pain that these people live with and that is—excuse my language—bullshit. How dare you judge others illnesses especially when you could not even begin to imagine what life with that illness is truly like. Before you go joking around about someone’s illness (if I see one more corona and Lyme joke I will lose it) or tell someone to “chill” because their illness isn’t “that serious”—get educated. Learn about what that illness can really do.
Don’t listen to the doctors either, listen to the people who actually LIVE with this disease daily. We are the true experts. We can tell you what it is like. We can tell you the hard truths, the ups and downs—all you have to do is ask and listen.
A letter I received years ago from Elena Delle Donne.
Thank you Elena for sharing your story and bringing light to the atrocities surrounding Lyme disease. Us lymies got your back.
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