As I’m doing my daily Lyme research this morning, I’m running across page after page of fellow Lyme sufferers who are desperate – but not just desperate to get better, desperate for the world to know about their disease. The more I’m learning about what I have, the more I’m finding out how little so many people in this world know and understand what Lyme is.
A few months ago, I encouraged my co-workers to watch “Under Our Skin” – the amazing documentary on Lyme - so they could get a better idea of what I’m going through, and why I am the way I am sometimes. I was encouraged by most everyone, and even discussed the movie a bit with one gal who actually took the time to watch it. So uplifting to know that people care! But one thing that keeps sticking in my brain – and this may have been before I sent the video link out – was another conversation I had with a coworker where she said, “well at least it isn’t something you can die from (like such-and-such disease).” But this is the thing – you CAN DIE FROM LYME – and many people have!! Luckily I haven’t reached the point where this is a concern, but the ignorance that is out there is so sad!
Just a few weeks ago I was getting my teeth cleaned. I had to share my health history and my hygienist said, “Pardon my ignorance, but what IS Lyme disease?” Of course it was a little difficult sharing the basics while she had her hands in my mouth (how do they expect us to talk like that?!). Obviously she went to school for a different purpose. But I’m reading online how many doctors and nurses have admitted that they know nothing about the disease – that’s just crazy! This epidemic has surpassed AIDS in our country, yet nothing is being done about it! And the doctors that are trying to help, are being threatened with losing their license or have lost their license.
I’m finding story after story to be the same as mine - our disease has turned chronic because it took so long to be diagnosed. Patients are suffering for years with symptoms, spending time going to doctor after doctor and spending thousands upon thousands of dollars to find an answer. Disabled, jobless, homeless, friendless, depressed, destroyed, dead.
It kills me to see how many people are suffering like I am. But what’s even worse is knowing how many people have Lyme that don’t even know it, because the doctors are not educated enough to diagnose it properly and then, that the Chronic Disease Center is leading the medical community down the wrong path when it comes to treating it. Many people who have Lyme share that they were previously diagnosed with a different disease (MS, ALS, Parkinsons, Alzheimers, Chronic Fatigue, Fibromyalgia, the list goes on….) It’s a scary realization, the link between Lyme and so many other diseases. Check out these links to read up on a few:
Every day I wonder, “what can we do to be heard?” I’ve even contemplated trying to contact celebrities who could get the word out (especially those that have Lyme themselves – there are quite a few!), tv shows, etc. I keep coming back to the ALS challenge that blew up this summer on Facebook. I certainly don’t feel like I could accomplish such a feat, but then again, I guess it all starts with just one person? For now I’ll settle on writing this blog, in hopes that I can reach just one person – someone that may be suffering with a “mystery” illness like I did for 8+ years….
