Michael Specter: The Growing Battle Over How to Treat Lyme Disease

With all the incorrect information and dismissive attitude towards those who attempt to research and be cured outside of the shamefully backwards medical community, it’s hard to believe that this is progressive. And yet it is.

"IDSA in a nutshell", a sarcastic performance made possible by the comments on NPR Lyme articles

As everyone knows, all these Lyme people are loonies. Completely illogical.

They clearly have no clue about any science at all.

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They can never cite statistics.

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They have no idea about the history of medicine or about the behavior of spirochetes in general.

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Oh, and god forbid they actually cite real researchers and read their articles.

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They’re all so irrational and scientifically uniformed. It’s not like people are ever symptomatic after three weeks of antibiotics or anything, or that Lyme rates have skyrocketed. Let’s stick with the same research we’ve been doing for the past thirty years.

Invisible Disability: The List of Things People Who Do Not Understand Invisible Disability Say

People have said some pretty hurtful things to me regarding my health although I’m sure they (most of them, at least!) didn’t mean to be hurtful in the least. Nevertheless, it is important for me to talk these things and point out to you why they are hurtful so you can try to avoid saying these things to others in the future. I know of people who’ve had people say a lot worse to them, but here are some examples of what I’ve been told personally:

     “You don’t look sick.”

     “You look great! You must be feeling better.” -On a day I could barely string two words together

     “Are you sure you just don’t have too much stress?” -A form of the classic “it’s all in your head” routine I heard a lot both from layfolk and doctors

      “It must be great to stay home from school. I wish I could!”

      “You get extra time on tests?? You are so lucky!”

      “I wish I could get out of gym class too.”

      “You drove your car? Why didn’t you walk?”

      “You might feel better if you exercised more.”  -This last one really goads me.

Can you see why these statements are so misguided? They insinuate that I do not have any health condition whatsoever; they assume that I am at the same level of capability and health as the person speaking them. These statements are all coming from people who knew that I was sick. Clearly, they did not either understand or believe that I was sick. You can imagine how very lonely I felt. How can you force people to understand that you’re struggling so hard to get by and that their words demean both you and your daily, endless fight? If people understood how much physical effort it took me to simply speak with them, would they still make make such careless and hurtful comments?

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Invisible Disability: living with chronic disease

A big part of understanding invisible disability is understanding what it’s like to live with a chronic condition. I cannot possibly be able to explain everyone’s experience, as every person is different and no two conditions are ever the same. But I can try to give you as general an explanation as I can using my point of reference: my struggle with Lyme disease. I will speak in the present tense and the person I refer to will be YOU. I am trying to give you as real a picture as any I can make and help you imagine what is is like to be chronically ill.

—-

Your alarm goes off after sleeping thirteen hours, which is never enough. You wake up, which is often a long and arduous process because you’re always tired anyways and not to mention you’re always in pain too, because every morning you wake up your lymph nodes are so swollen that rolling the wrong way on your arm will send of a wave a pain through your body, and your joints— well, they’re always painful. You have to take stock for the day. You think about everything you have to do for that day: all the homework, all the places you have to go, (and worse yet) all the places you have to walk to, all the reading and studying and conversing and other day-to-day activities that you have to do. This is pretty normal so far, right?

But first things are first. You have to walk to the bathroom to brush your teeth and bathe yourself. But the moment you finally muster the energy to get out of bed through your pain, you see an aura— you have a migraine coming on. You groan a little, put your feet on the ground but that strange pain you have on the bottom of your feet in the morning is acting up again. Oh well, you think. What’s some more pain on top of the pain you already have? But you are so weak that you must prop yourself on every piece of furniture or wall that you can, and cling to it for support for the few feet you have to travel to get to the bathroom. When you get to the bathroom, you have to sit for a few minutes to find the energy and to let the pain settle a bit before you even get a chance to get in the shower.

But your day has barely begun. You still have to somehow have to get dressed, making sure you put on clothes that won’t become agonizingly painful for the rest of the day. You have make it downstairs. You have to cook your breakfast. You have to clean up after yourself. And then, by some miracle, you have to make it to classes, listen to the teacher, work out what she’s saying through the other students whispering, and remember it by an even greater miracle as your foggy brain struggles to understand words and and your body is in agony and you are so very, very, very tired. The harder push, the harder your condition pushes back. The more you struggle, the more you try to do, the deeper you sink into the depths of your illness.

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Invisible Disability

It’s not like me to be extremely serious, I know, but there’s something out there that many people don’t really understand or even knows exists. I’m not a great expert in the field outside of simply being a person affected, but regardless I feel it is important to open up this discussion. And it’s something that really needs to be addressed.

Just because a person doesn’t look sick doesn’t mean that they aren’t.

On behalf of all those who suffer but may not look it, I’m going to talk about invisible disability. This may or may not be a statement you are familiar with— it is, in a nutshell, the idea that while it may not be physically visible, a person’s disease or disability can still exist and is just as real as someone whose disease is visible. You do not have to have a pronounced physical deformity in you leg to have trouble walking. You do not have to have a terrible cough, lose a lot of weight, or really anything at all to feel chronic, extreme fatigue.

An invisible disability is a broad category, and it can be various mental health conditions to things like pain and fatigue. But people with visible disabilities— say, someone in a wheelchair— can also have invisible disabilities— the medicine that said person in a wheelchair takes for their chronic pain condition makes them feel sick or groggy.

For people who have the luxury of being healthy all their lives, those who do not personally feel the daily— hourly— struggles of having a debilitating condition regardless of its manifestation, this can be hard to understand. It is perfectly understandable to not know, and you are, in fact, lucky to not know. Which is why I’m writing about this now.

The instigation for this post is that this month— May— is Lyme Disease Awareness Month. I have personally struggled in a world that has a lot of people who don’t understand the concept of invisible disability. In fact, I have struggled in a world that has trouble understanding that I could even be sick in the first place. It’s terrible to feel that pressure. It’s terrible to feel like everyone believes you a liar because they simply can’t comprehend what’s going on in your body.

I’ll be making a series of posts about invisible disability in conjunction with Lyme Disease Awareness Month. My posts aren’t just going out to the Lyme community, they’re going out to the world. They are meant to be read by everyone, healthy, struggling with disease and disability, young, old. We are all members of a community that encompasses all sorts, and we all need to be aware of the impact we make on each others’ lives daily, and comprehending invisible/visible disabilities will help us do that. So please take a few minutes to read these posts. People with disabilities often struggle to live in a world that is not engineered for us, and every bit of understanding can make our lives a little bit better.