It always still amazes me. How little Lyme disease means to so many. I understand one could probably tune it out somewhat until it reaches their family. But the amazing amount of apathy I have experienced myself and heard about from others is disheartening. I’m talking, obviously, about the late-stage or chronic type of Lyme or tick-borne disease. Not the type where people will get a few symptoms, and then they are fine. (AKA the lucky few).
Let’s say someone found out they have cancer, MS, Parkinson’s, ALS, and they post this on Facebook. All family and friends will post encouraging words, ask how they are doing, maybe even set up a fundraiser. I could count on one hand the times I heard this happening for someone who posted that they or their child has Lyme disease/tick-borne disease.
Maybe they don’t get the seriousness of the disease the way they do the others. That’s fine. I don’t blame anyone. I don’t know that I wouldn’t do the same.
But being on the other end of that and seeing it happen over and over again, you start to wonder what other disease does this happen with? Really? Do people just think they got a bug bite? Or are they just this heartless?
With recent celebrities coming out and telling their stories about dealing with Lyme disease, I think more people understand what it can entail. The more it is spreading, more know someone with it. But as far as understanding what one goes through … I still think that is lacking IMMENSELY.
I’ll try to sum it up in a few points.
Usually they have had to go through many doctors and tests ruling out almost everything else before getting a Lyme diagnosis. If they seem happy about it, it is just because they finally know what the heck is going on. It’s not an easy thing to figure out because it imitates so many other diseases.
Many times they have been accused by someone, either a doctor, family member, friend, or even themselves, of being lazy or weak. Out-and-out unconditional, no-question or sideways glances support like those with the other diseases get? Probably haven’t had that.
They are probably somewhat overwhelmed, learning about an infection that is immensely complex in the way it behaves, and on top of that the shock at hearing about how hard it can be to get proper treatment, and when they realize they may never get better and could die from this … It is a lot to take in to say the least. When they find their friends and family not only not offering even just words of support but down-right ignoring them … It can break the toughest person.
Sometimes they have had a difficult time even saying they have Lyme disease because there can be a stigma attached to it. I think that is going away quite a bit …but not enough. There are still so-called experts and websites (like Heathline) that have articles that call Lyme patients outright crazy and quote statistics saying only “wealthier” people get Lyme, or have names like “No, You Do Not Have Chronic Lyme Disease.” Heck, there have been a few “studies” in research publications stating Lyme patients/advocates are a danger to public health.
Know what’s funny about this one? Paul A has been involved with research on what types of medications are best for persistent Lyme as well as if pulse dosing is helpful. This guy. One who has said over and over again on the record that Lyme cannot be persistent. The guy who calls this an unorthodox treatment and insists those saying such a thing are a danger to public health should be made to wear an “I’m an A-hole and I was WRONG” T-shirt in public for the rest of his life. After all, if just talking about it is a public health threat, what the heck would his crime be, actually researching it?
Quote from said research “While various drug combinations showed improved activity against stationary phase B. burgdorferi persisters, daptomycin combinations had the best activity among drug combinations against persisters.”
Now, I’m not trying to shame anyone or bring on a pity party. Lyme patients only want understanding, equal treatment. They rarely get help in the medical establishment so it can be especially tough. When nurses roll their eyes and doctors sigh at them, these people who are supposed to help them, it can feel like being a complete outcast and entirely hopeless. A few kind words from a friend or neighbor can mean, literally, the difference between life and death.
Though accurate stats on Lyme (because of such under diagnosis) are hard to find, it is well known that suicide is the leading killer of Lyme patients. It’s not because there is fundamentally something wrong with these patients in the first place; it is because it is an infection that does work its way into the brain and can do damage there that makes people act in ways they normally wouldn’t when the above-described lack of support and media bullying piles on top of the pain and multiple other ways Lyme destroys your body … finally gets to be too much.
So for 2016 I hope I see and hear more stories about how family and friends are encouraging people, responding to their stories, and coming to the aid of Lyme patients the same way they would for any other disease.
The sound of silence –for too many already– has become permanent.