Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Someone reposted an article-which Melanie had posted some time ago - on this same topic.
Now and then I repost the following one, written by a Lyme disease patient and incredible advocate for all of us. Sadly, she died a few years ago.
I am not sure, but I think she is the patient they refer to when they want to say long term treatment of IV antibiotics is too dangerous. She died of an infection at the injection site.
Betty probably knows more about it than I do. I did correspond with Geri and this article tells you what kind of wonderful person she was. I split up the article to make it more readable. Ann - OH
[quote] Looking Good, Feeling Bad
[By]Geri Fosseen, Director, Ames Chapter of the Iowa Lyme Disease Foundation
``Oh, but you look good!'', they say, thinking they're making you feel better. Inside, your stomach grows tight, you inwardly cringe, and fight the urge to scream. ``On No!, not this again!'', you think.
Welcome to the world of Invisible Chronic Illness. This is a hard world to live in, one in which you're positive no one could possibly understand how hard it is to live like this.
Well, I'm writing this to tell you that someone does understand. In fact, anyone living with Lyme Disease probably understands. Your body hurts, fatigue seems like such an ineffectual word for what you're feeling, you constantly struggle to find words you want to express, and yet, ``You LOOK great!''
That anger you feel inside, the shame at feeling angry and the depression that follows is all very normal. We all go through this.
Throughout my illness, I have heard so many fellow patients express frustration at this issue that I thought it might be time to take the covers off of it and expose it for the wide-spread frustration that it truly is.
I could write about how everyone is just trying to make you feel better about yourself, or that they don't know they're hurting you, but frankly, that's not the point here. I'm here to talk about what it feels like to hear these things, not to defend those who say them.
Let's just make the assumption that no one saying these things is purposely out to hurt us and not bring up that side of it again, ok?
So, that leaves us with how it feels. How many words can I come up with to properly express what you've probably felt upon hearing one of these statements? Let's see; frustrated, confused, angry, sad/hurt, flattered, mis-understood, minimized&ldots;I could go on, but let's settle with these.
Frustrated: Sure, it's frustrating, you want those around you to understand what you're going through and to always know the exact right thing to say. You're busy living like this, the rest of the world should find a way to understand without frustrating you, right?
Confused: Definitely - you think you should feel complimented, but instead you're angry. You think you should thank them, but instead you want to scream and cry.
Angry: Why doesn't anyone understand you? Why can't they see how much you're hurting? How scared you are?
Sad/Hurt: It's very difficult to feel alone and when you feel that no one understands you, you do feel alone. You begin to feel that you're doing something wrong and everyone else is right. It hurts.
Flattered: There is still that one little tiny piece of you who is happy to know you're hiding it well. Of course, then you start all over with all the other emotions, but still, that little part of you is there.
Misunderstood: You work so hard to help your friends and family understand what's happening to you, but no matter how hard you try, they just don't seem to get it.
Minimized: When they tell you how good you look, sometimes it can feel like they're saying they don't believe how hard it is to live like this. That maybe you're exaggerating. You begin to feel very small inside.
Ok, so now you're wondering what part of this article offers up the solutions to all these feelings.
Well, that's not what I'm doing. I'm trying to let you know that we ALL feel these things. That you are NOT alone. You're not ungrateful, mean-spirited, malingering or anything else except human. You are living with a horrendous disease that manages to stay invisible.
Fantasies about wishing you had a cast on your leg, beginning to use a cane so people will stop staring at you when you get out of your car in a handicapped space, wondering why the 80-year-old woman in the supermarket seems to have an easier time than you...;these are all normal.
Knowing that they are normal may not make those feelings go away, but I'm hoping that at least you'll allow yourself to feel them and not beat yourself up for them.
If you'd like to read more about invisible chronic Illness, I suggest the book ``Sick and Tired of Feeling Sick and Tired'' by Paul J. Donoghue, Ph.D, and Mary E. Siegel, Ph.D.
This book accurately explores the difficulties of living with an Invisible Chronic Illness, and I highly recommend it. [end quote]
posted
Ann, thanks for posting this well-written letter by Geri Fosseen! Very effective.
Here is what I do know about Geri since I had never met her.
She was from Radcliffe, Iowa, and was ONLY 30 years old when she died leaving her husband and 2 young children. I believe it was 4-6 years go; before I was dx correctly with my chronic lyme almost 2 yrs. ago.
I remember seeing her obit in the paper; she was very beautiful as well.
Ann, how about copying the article to TREEPATROL'S newbie links; I don't think it's there & should be OR this link and they can read more details about Geri.
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