Things Not To Say To Someone With Lyme

I know that in these posts, some things I say may come off as angry or bitchy. Understand that I am both of those things. I don’t expect everyone to understand or even like everything I say, but it is my truth. I am also a very loyal, loving, funny and kind person. I just feel that if we are going to get anywhere with this disease, the hard things need to be talked about and hopefully heard. Having said that, I still hope you enjoy the following. 

There have been many things that have been said to me over the years that are both hurtful and frustrating.

I know people don’t mean harm but when heard repeatedly, it makes me want to punch you in the throat. (said lovingly of course)

Number one: “You don’t look sick.”

This is usually said in a way that insinuates that I am both a liar and a fake.  Think “Pshhh, you don’t look sick, why are you acting like the sky is falling”

I remember an occurrence not too long ago when a friend came to visit from San Diego and we were going to go on a hike. Before we left my house she asked what bothered me the most about what people say. I told her the above aforementioned phrase. She looked at me like she didn’t quite understand why this was a big deal. A little while later we went toto meet a friend. When he asked what we were up to, she said she came to visit because I wasn’t feeling well. He took one look at me and said “You don’t look sick” with that snarky tennor and my friend just stopped, and looked at me with shock.  I just shrugged my shoulders. This happens all the time. Don’t get me wrong, I don’t like looking ill, but you never know what someone is going through.

Please, just be kind, even if you think someone is just a crybaby.

Number 2: “Oh we all do that, you’re just getting old”

While it’s true that those my age (50 in case you are wondering) have what are called “senior moments” but those suffering from Late Stage or Chronic Lyme Disease have a very high chance of having cognitive difficulties. There is a test called a Spect Scan that tells wether or not one has brain damage. I had this test done over a year ago and it came back positive. Having gone for so many years without a proper diagnosis it has affected my brain. It’s mainly my short term memory and it isn’t always, but it’s often. What is an everyday occurrence is the words that come out of my mouth when my brain was thinking something else. For example, I’ll hand you a pencil and call it a fork or tell you I’m going to Hawaii when I mean work. This happens dozens of times a day. This may not seem like a big deal and I’ve become an expert at catching it and fixing it before you probably are even aware, but it’s exhausting and scary. Yesterday it took me an hour to remember a prayer I’ve been saying since I was probably four years old.

For me, the only way I can describe it is, if the brain were an egg shell, half of mine is just an empty white space. Nothing is on “the tip of my tongue.” Things are just gone. It’s beyond scary and embarrassing and there is even a bit of shame attached. My logical mind knows that it’s not shameful but it’s there none the less.

The worst was when dining with a dear friend, pre diagnosis. First, my hearing went (as happens with Lyme) and I couldn’t remember her name. I just kept looking at her and I see her mouth moving, not only could I not hear her, nor could I remember her name. I kept saying to myself “I know I know her, but what is her name.” It all came back eventually. I didn’t tell her this story until maybe a year later as I didn’t want her to know I thought i was losing my mind.

I have a very real understanding of what it feels like to be in the beginning stages of Alzheimer’s. I hope you don’t ever have to experience such a thing.

Just try to be aware that we are all not the same and are not all going through the same thing.

Number 3: Well your out and about, you must be better

 

Number 4: You’re so skinny! What’s your secret?

While normally, as a woman this is the best thing one can hear! However, when you haven’t been able to eat anything that isn’t soft for months and feeling like you might fall down and break at any moment, trust me, you’d give anything to have an extra ten pounds to have a better foothold.

Ladies, listen up. Me, as much as anyone, likes to stay fit but I go up and down five or ten pounds often and it can be frustrating.  But trust me, men don’t want super skinny. Don’t do it for men, hell don’t do it for women. Be healthy, whatever that is for you.

Take for example:

 

 

 

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