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Friends And Family
Looking Good, Feeling Bad
By Geri Fosseen, Director, Ames Chapter, 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…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.
Mis-Understood: 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. Also, talk about these feelings with other sufferers. Bring it up at your support group meeting – you'll be surprised at how many people will look at you gratefully for bringing it up.
This article is copyrighted. For reprint information contact:
Geri Fosseen grf@jefferson-scranton.k12.ia.us
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How
I
Am
Feeling
I built this page to update my Lyme Disease Support
Group on the course of my health.My support group
includes friends,coworkers,family members,and Lyme
Disease support group leaders.
By now the LDSG knows that I am convinced I have Lyme
Disease, but the doctors I have seen have not given
this diagnosis.When my current Primary Care Physician
agreed to have the Lyme Disease test done, I became
99% certain I have LD.The two-tier LD test is unreliable, but when the first part (EIA) was positive,that was,together with my twenty-plus
LD symptoms,proof enough for me.The second part of
the test (Western Blot) produced two positive bands
(five out of ten are needed for a positive).There are
many reasons why I may never test WB positve,but my
PCP had the "proof" he needed to dismiss my self-diagnosis of LD.
Actually,doctors are not supposed to diagnose LD based on the LD tests:that is what the Centers For
Disease Control has decreed.The test can SUPPORT a
CLINICAL(patients'symptoms,medical history) diagnosis
but doctors can not rule out LD on the basis of negative test results.The ELISA and the WB have
produced so many false negatives that they are considered a joke in the LD community.One piece I
saw on the net called them the lies that can kill you.
My PCP gave me the big "blow off" at my last visit.
He asked me if returning to work made me feel better,
and I said yes.He then spinned my words, so that now
according to him, I am symptom-free!I was unhappy with his one-symptom-at-a-time approach by then.My
depression was causing the LD symptoms:he prescribed
Paxil.Chest pains:I will refer you to a cardiologist
for a stress EKG echocardiogram.Dizziness:I will refer you to a ENT specialist.(The ENT did a great job cleaning my ears out,I should visit him every
year!)Numbness: I will refer you to a neurologist.
And finally: I can not pinpoint what is going on with
these nonspecific symptoms;I will refer you to a
rheumatologist.
The rheumatologist listened to my symptoms laundry
list, and concluded from his office tests that he
could not prove my subjective symptoms to be true.
He had blood work done (including another lyme titer)
and scheduled me for a September 10 visit.
The neurologist blew off my LD "diagnosis", and referred me for a cervical-spine MRI.Twenty minutes
into the test I began to shake uncontrolably.and
pleaded with the MRI technician to let me out of the tube.The
first part of the test was completed,but I am not
going back for the dye contrast.This was the straw that broke this camel's back.
I was informed by local LD support group leaders,and
"my good friends" at lymenet.org and sci.med.diseases.lyme to get to a LLMD asap.
The response from LD support groups has been great:
Joel,Larry,SueH,and Kevin have sent me LLMD recommendations,and tons of information
about LD.
I have scheduled an appointment with
a LLMD on August 28.Larry has recommended I see this doc.Kevin has said he(the LLMD) believes in Dr.B's
approach.Joel has offered his opinion about this doc.
Larry and Joel have given me advice concerning my first visit to this LLMD.I was very impressed by a
piece that the LLMD wrote,and that I read at Larry's
LD site.I was leaning toward him.(Larry informed me
that his wonderful LLMD was not taking on new patients at that time.)
Finally,I want to thank my family,my next door neighbors, and coworkers for
standing by me in what has been my year of hell.
Antibiotics,Vitamins/Minerals,Enzymes,Analgesics....
TAKIN'
IT
TO
THE
STREETS
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