Looking Good, Feeling Bad
Geri Fosseen, Director, Ames Chapter of the Iowa Lyme Disease Foundation
but you look good!, they say, thinking theyre 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 youre positive no one could possibly understand how
hard it is to live like this. Well, Im 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 youre 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 dont know theyre hurting you, but frankly, thats not the point here. Im here to talk about what it feels like to hear these things, not to defend those who say them. Lets 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 youve probably felt upon hearing one of these statements? Lets see; frustrated, confused, angry, sad/hurt, flattered, mis-understood, minimized&ldots;I could go on, but lets settle with these.
Ok, so now youre wondering what part of this article offers up the solutions to all these feelings. Well, thats not what Im doing. Im trying to let you know that we ALL feel these things. That you are NOT alone. Youre 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&ldots;these are all normal. Knowing that they are normal may not make those feelings go away, but Im hoping that at least youll allow yourself to feel them and not beat yourself up for them.
If youd like to read more about invisible chronic iIllness, 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. Also, talk about these feelings with other sufferers. Bring it up at your support group meeting youll be surprised at how many people will look at you gratefully for bringing it up.
Another excellent book is Katrina Berne's Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses.
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