The Pain of Ignorance

This may be a bit long, but please, indulge me.

Ignorance is lack of knowledge or information. Ignorance is also a rampant condition that seems to have become a disease of sorts. This is supplemented by those that attempt to look less ignorant by obtaining the easiest to find information, or the first bit of information they come across with words that somewhat match the subject matter. Ignorance is also amplified by some people’s need to placate their own belief of knowing by finding only information that supports their opinion, even if the subject matter is fact-based.

This is the core of my frustration today. You see, I have a severe problem with reading posts and comment sections about illnesses I am strongly aware of. This includes ones that I have been studying for over a decade, as well as suffering from them. And this is where I find myself going through a roller coaster of surprise, bafflement, confusion, frustration, and often even anger. This happens a lot. So much that I have left many, many chronic pain, fibro, and similar support groups and pages. I would get so aggravated trying to explain things to others, trying to inform them of medical and scientific research, of actual facts and confirmed information, only to be blasted with some of the most ignorant and acutely incorrect responses punctuated by insults, pretentiousness, or downright idiocy.

Before I go into what pushed all my buttons today, I want to explain why I feel confident in my understanding of certain subjects. When I was first diagnosed with Fibromyalgia, I thought it was psychological. I went through three different therapists. I finished my degrees in Criminalistics and switched to a major in Psychology with outside classes and certifications in various areas of medicine. And then I realized it was not psychological; it was neurological. When I began my Master’s, my major was Neurological Psychology, with a minor in Forensic Psych and Behavior Sciences and my electives all being focused in various areas of medicine (primarily chemistry, overall anatomy, and lab-based studies). I kept up, and still do, with the National Institute of Health, John Hopkins institutes, Mayo Clinic, as well as facilities and research programs in Sweden, Australia, and at multiple universities. Before I wrote The Fine Print of Fibro, I knew what the hell I was talking about. I pride myself on knowing what the hell I am talking about. If I feel the need to speak up, I want what I say to have legitimacy, and thus, I stay informed and up to date on research, knowledge, studies, etc. that pertain to the subjects I write about. If I learn something new, I read and study the hell out of it. If I get foggy brained about it, I read and study it again later. So that, I believe, gives me some qualifications to speak about the conditions I write about (Fibro only being one of several, but this is the subject of today’s rant).

What pissed me off today? Well, as many who follow any chronic pain or fibro page, or even the BBC, may know, Lady Gaga has had to officially end the tour (which has already been halted on multiple occasions) due to her health. Cue the internet gurus of medicine.

A couple of Facts:

-Wikipedia and any of its derivatives are not, in no way, a legitimate source of information, especially when it comes to medicine, science, or many other areas. Why? Well, almost anyone can change, add, or delete anything they want on most of their pages. I know, I have done so. I have also bee offered jobs to do so. It doesn’t take much. And you definitely don’t want me telling you how to do open heart surgery or give a full rundown on Down’s Syndrome…because I don’t know that stuff. And yet, I can, easily, do so.

-Google is how we find out everything. But, surprise!, that first page that comes up? Half of that was paid for (to pop up on that first page). Whether they paid for it to be there or they paid for people to search and move the algorithm enough to do so, just because it is there first, does not mean it is the best source.

-Yes, this page is technically a blog, BUT blogs are not a basis of factual information. They are not a primary source. I try to be a secondary source, someone who only uses primary sources (such as the actual research notes, pages, publications, etc.) to back up my information.

-Any website with natural, nature, holistic, alternative, etc. in its name will probably not be a source of unbiased information. I’m all for some honey and lemon to soothe my throat, some menthol to clear my sinuses, and so on. But most of these sites are pushing some “course” or supplements or overpriced oils and are not out to help you be healthy. Sorry, but true.

Okay, now some facts about Fibromyalgia:

-A genetic, neurological disease that affects the central nervous system (CNS, the brain and spinal cord) and the peripheral nervous system (PNS, all your other nerve endings and sensory mechanisms).

-You are born with it or you are not.

-It is not curable.

-Although the genetic marker is similar to RA(rheumatoid arthritis), it is not the same. But it does exist, and albeit expensive, they can test for it and are trying to make the test more affordable.

-No two people have exactly the same symptoms because no two people have the exact same medical history, bodies, lifestyle, environment, experiences, etc.

-What helps some people may not help others for the reasons stated above.

-It is not psychological although the symptoms and flares can be enhanced with psychological issues, as most diseases are. If the body must deal with physical issues on top of psychological issues, it will be exhausted and both with be more difficult to deal with. The constant pain is exhausting. The constant pain and exhaustion is depressing. The depression makes it harder to deal with the rest. And so on.

-Raw food diets, vegan diets, any diet does not cure nor completely help with fibro. Eating healthy means your body has what it needs to perform at its peak, even if its peak is much lower than the healthy person would be. Energy and the ability to fight off issues can be assisted with proper diet. This is common sense for every human. Stop suggesting it to people with illnesses. We know. We’ve tried.

-Yoga and any other exercise can help with stress and muscle issues for those who are able to do so. As with any human body, lack of mobility is harmful to the body and moving can help the body. That doesn’t mean it cures anything. And if someone can’t do it, they can’t do it. Just stop.

-I have studied and worked with herbs and essential oils since I was a child. It was a thing in my household as we have some old-fashioned beliefs. They help with some issues, yes, but minor issues. There is no herb or oil or supplement that gets rid of fibro. The only plants that can ease fibro pain is usually that which comes from the poppy or cannabis plant, and that still varies on the person, their chemistry, their health conditions, and their medications. Stop paying four times more than you should for a vial of lavender EO, just stop.

-Fibromyalgia is not an autoimmune disease. This one is hard for some people to swallow as they think it is because either their doctor mistakenly said it was, or that is their conclusion based upon their issues. Fibromyalgia can lead to some autoimmune diseases being triggered or occurring because of how it exhausts the body. Fibro does not impact the leukocytes, the white blood cells, the immune system warriors of the body. Again, the constant pain leads to constant exhaustion (and sometimes bad sleeping, eating, and mobility issues). This lowers the bodies immune system simply because it is not getting what it needs to be strong. In return, this makes it easier for those with fibro to get sick and not be able to fight back as well as a healthy person may. When you have multiple health issues with fibro, they ping off of each other, further weakening the body and further enhancing the symptoms of the issues. Fibro is not an autoimmune disease, but it is something that weakens the body enough to allow autoimmune issues to become prevalent.

This is all I need to say. Everything I pointed out above is something someone contradicted in the comment sections of the 4 articles about Lady Gaga today. Even people with fibro were getting mad at those who said it doesn’t exist (are we seriously still saying that? Oh, yes, there are also people who think the world is flat and others who like to eat detergent….what was I thinking?) and telling them that they had that autoimmune disease. Then there were those that said they had it but cured it with oils or their diet or some other miraculous drug. There were those saying it was a psychological condition that should be dealt with using antidepressants and therapy. There was one person who suggested it was a conspiracy created by big pharma (because it is so easy for us to get medication to help treat the symptoms of the disease….cue laughter). No. Just no. Stop and no.

So anyway, I don’t know why I torture myself. When I wrote my book and then later started this website, it was done to inform people, help support people, and to get actual information out there. It has really beat me down on how many people don’t want information, don’t want help, don’t want explanations. Someone said it best recently when they said people don’t want answers, they want enablers. People don’t want to be smart, they want to appear smart. People don’t want help, they want affirmations of their own beliefs. And for so many, this is true.

I have had a hard time trying to keep this site full of new information and I apologize for that. I suffer, as many of you do, from a plethora of issues. It seems I may need to devote my studies to MS, as that is a possible problem I may be facing. Focusing is hard. Exhaustion is permanent. I fall so much. I am trying to do things, to help people, but its hard. The number of people I know I have helped versus the amount that goes off on me is very tilted. I had one comment section turn in the weirdest way possible. Rather than say I was wrong or misinformed or my information was bad, they proceeded to tell me I was a horrible person for “writing like you all stuck up and shit.” I kid you not. I had 47 comments all tearing me apart for acting smart, not talking like people talk, and so on. I was called a know-it-all, a stuck up bitch, and so on. It blew my mind. Their big issue was I used big words and explained things they could google if they wanted to know what it meant. I “talk like a doctor but u aint no doctor” (seriously, they said that). So yeah, definitely having a hard time pushing through.

You want to read my book on fibro? You want to read it for free on your ebook reader? Contact me. I will give you a free ebook copy because I want to help people feel not alone and help people understand as much as they can about the disease. I have given away over 600 copies of that book and sold 40. I don’t care. I want to help. That is why I do this. And if you need help or support, contact me. I will get back to you as soon as I can. I can never be what I started out studying to become. The second before the last surgery was when I was told I would never have the word “Doctor” before my name or M.D. or Ph.D. after my name because I was too ill to continue my education and I would never be able to be in that field. It broke me, for about a year, and then I started writing. I can still help and I won’t give up.

Big hugs and love to all my warriors! And thank you, including those of you who don’t suffer but want to know, want to understand, and want to help. Thank you.

Advertisements

One thought on “The Pain of Ignorance”

  1. Amanda, your post about “the pain of ignorance” is very knowledgeably written and it makes so much sense. I don’t have fibro myself (I have osteoarthritis and osteoporosis) but I know people with fibro and I have some understanding of it. I appreciate learning more about it because knowledge is power and learning more helps me to have a better understanding of what others are going through.
    It really does seem that there are many people who would rather have enablers than answers, and instead of help, they just want affirmations to affirm their own beliefs. You are so right and it’s applicable to many things in life even beyond illness. I’m sorry you had 47 comments tearing you apart for acting smart, etc. Wow, that blew my mind too. Instead of complaining and tearing you apart, maybe they could try to learn something, or just try to understand that you know whereof you speak and you’re trying to help and share what you know. Although I had some understanding of fibro, I just learned more from reading this post. I knew fibro was neurological and affected each person differently but I didn’t know it was genetic. Hugs to you and I appreciate your post!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.