In my small online world as a professional homebody I see post after post about "Awareness". Ranging from posts detailing life with chronic illness or changing your profile picture to superheroes hoping to garner awareness for childhood cancer. I have to wonder if the purpose is to educate, to feel understood, or even because you feel guilty for your own good health? And it makes me wonder what kind of awareness truly changes things and when is it absolutely necessary?
I have multiple health problems but I only feel dire need to spread awareness for one: Lyme Disease. With CRPS and POTS, I am a bit of a puzzle for doctors to know what kind of treatments will work. It's frustrating and difficult to manage but I can handle it for the most part. Lyme is a whole different story. As miserable as CRPS and POTS can be they are not fatal whereas untreated Lyme has the potential to cause death. Additionally, I have been laughed at, mocked, and told flat out that I don't have Lyme by doctors who should know better. Thankfully I was stubborn and knew for a fact that I had Lyme. However it is far too easy for someone who has undiagnosed Lyme to search for many more months or even years for some sort of diagnosis after a doctor says those sorts of things. By then Lyme Disease is far harder to treat. And while the Lyme continues to go untreated the patient can start to think it's all in their head because doctor after doctor refuses to diagnose and treat Chronic Lyme. Then doubt starts creeping in possibly even denial. As time keeps going the disease starts taking a greater toll on their body. Perhaps now a doctor starts to believe the patient is in great pain but it's easier to write a prescription for pain pills to cover up the symptoms than it is for them to find and treat the root cause of the pain. While the pain decreases the Lyme keeps spreading sometimes silently and other times violently. It's heartbreaking to watch someone suffer all while under the care of a doctor who is supposed to have their best interest at heart. Some doctors may truly care but without proper education how can they help their patients?
This is why Lyme awareness is so needed. We need doctors to be taught that Chronic Lyme exists. People need to know that you can contract Lyme Disease in almost every state in the United States and in many other countries across the globe. Lyme needs to be further studied and accurate testing needs to be available. Awareness needs to happen so people can get their life back and not have to die because the CDC can't swallow their pride and admit how rampant Lyme is. We need awareness so that a patient is believed by their doctor and can find the help they need instead of thinking their only option is taking their own life. Awareness is crucial so people know what symptoms to look for if they have been bitten by a tick or suspect they may have Lyme. Okay, so awareness is important then how should we go about it?
Education is key! Someone might google Lyme Disease if your profile picture is a lime green ribbon but what if only non-accurate websites come up? I think we need to post articles from the Lyme community "underground". Patients who have been through it and doctors who treat patients with chronic Lyme. Watching Under our Skin and encouraging friends and family to watch is a great way to spread the word. Asking someone you know who is struggling with Lyme can help you understand and could encourage them that someone cares. Sharing what you have learned (with permission if it's specific to a friend's battle) is a good place to start. Obviously I am writing my story on the world wide web so feel free to share with those you know. It's overwhelming to think of all the work that's involved in getting this information out to the world but it is vital! And together and with God I think we can do it!
Ten Tips to Prevent Chronic Lyme Disease and other great information.
A short video explaining Lyme Disease
Here is an even bigger symptom list. Keep in mind that Lyme is often misdiagnosed as Fibromyalgia, MS (Multiple Sclerosis), and ALS (Amyotrophic Lateral Sclerosis/Lou Gehrig's Disease). Sometimes anxiety and depression can be the first symptoms and it becomes the only health problem that is diagnosed only to find out later that Lyme was the root cause.
On understanding blood tests for Lyme.
Would love to hear your thoughts. Feel free to post links to other great articles in the comments and I may add them to the list.