The Sound of Silence 

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.”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/ 
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. 

–Loon Out 

Why Being Wrong Can Make You Right 

We all know someone who just has to be right and can’t admit being wrong; those who would argue that 1+1 does not equal 2, no matter what proof there is.  It gets to the point where these people are just irrational.  
Like the doctors who don’t know much about Lyme disease but just know it is not persistent.  They have not read the research that proves persistence and they don’t want to.  But they’ll argue with the research just the same.  

How does this make sense at all?  Someone disagrees with what you are saying but won’t even read/listen to what it is you are saying.  

The best I can come up with is that they simply are too attached to being right–like it somehow means they are stupid about everything; not that they just don’t know this one (out of a million) facts.  And even reading something contrary to what they believe will crack their already fragile ego.  

I feel lucky that I have been in a field of work where you have to accept in school, long before you start working, that you will be wrong, and you will be told how and why you are wrong.  A lot.  Usually, it is in a nice way, and that helps.  But it has taught me how to be fine with being wrong.  

It may be partly that I know I can’t possibly know everything, and I’m fine with that.  It would be super-human to have that ability.  But apparently some people just can’t accept that of themselves.  

I have also been an easy-going person most of my life.  It’s just a part of my personality.  This also makes being wrong easier for me.  After I got Lyme disease and couldn’t think well for, oh a few years, I got used to being wrong even more.  Luckily, those in my life usually understood, and I didn’t connect my sense of self with my lacking brain powers.  I also usually didn’t insist I was right on anything since I knew better, which also made it easier to admit I was wrong.  

Lyme patients need to deal with people like this all the time.  So how do we do it? We have a few options: 

1. Walk away. You probably won’t change their minds anyway; it goes deeper than them believing a fact about Lyme. 

2. Soften the blow. Note that a lot of people don’t know much about Lyme disease–one can’t possibly be expected to know everything about every disease.  Doctors may be more opposed to this line of thinking, but it’s true; otherwise, there wouldn’t be specialists. 

3. Ask them for their view or why they believe what they believe.  A lot of times they cannot back up their beliefs, but if they do give an answer, don’t try to argue with them.  Sometimes you can find a point you DO agree on (example: the tick species) and then expand on that, acting like they knew this as well, but you were just the first person who said it in the conversation. You are now on the same side and they are more likely to listen.  

4. Give them time.  They may go look up some facts on their own but do not want to admit they are wrong at the moment right to your face.  Then if you talk about it later at some point, they may be more open to ideas since they know a bit more what they are talking about.  When one knows more about a subject, they are more open to talk about it rather than just shut a person down outright. 

Even though Lyme disease has brought me some really sucky “presents,” it has also brought me some good ones.  I double or triple think things, I make more lists, am more organized, and I have learned to be wrong and how to be okay with it.  

This doesn’t mean that I won’t every once in a while break out the line “I’ve heard it both ways” (from Psych).  Sometimes I may even say a word wrong on purpose just to get a chance to say it.  Next time you encounter one of these especially irritating always-have-to-be-right people, you may want to try doing this.  Maybe even in every sentence.  It’s truly addicting.  

                                                                                 

— Loon Out