Dr James Schaller
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A Prophetic Lyme Patient Explains Your Feelings

The other night I took a quick look at my emails. I was sent the material below, and found myself glued to the screen for the first time in many years. Here was a 14-year Lyme veteran speaking with a prophetic genius that shook me. She spoke of the pain of being medically "invisible" to her friends, family and her physicians. In a short time, she has become a speaker with an unusual ability to touch hearts with simple truth. She reminds you that you know your body better than any doctor.

You are not crazy or wrong just because you are "only" the patient. The medical industry may not "see you" in the rush to dispense a pill and move 25 bodies a day through the door. If you feel alienated and alone with your illness, and feel devalued by the office mill that tells you black is white and you are "all wrong," you now have a prophetess who understands first hand. This caring sage has now created a place to be heard, and it is often she herself often listens to those who are hopeless and who need strong comfort to keep them safe. I am honored to post her decades of wisdom and experience with Lyme care.

THE FORGOTTEN

I am not crazy
This is not all in my head
I am not making any of this up
I am not a hypochondriac
I do not seek attention or fame
I do not have borderline personality disorder
I don't need a psychiatrist or a psychologist
Why do you admonish me when it is you who does not understand?
None of this is my fault
How can you say that my disease does not exist?
Why do you say it is not in my town?
Hush, keep it down or panic will ensue
People might move away
Or worse yet, never come and visit
We can't have that can we?
I stand here before you as a testament to my illness
I am a helpless victim of a cruel disease
And an even crueler system
Your misdiagnosis is designed to render a pill so I go away
You choose to ignore me and I will go away
Eventually I will die of a disease called ignorance
If the illness doesn't get me first
Some die by their own hand out of desperation
Many have tragically lost hope
You see the dark circles under my eyes and say that I must be tired
You have no idea of my tiredness
Not half as tired as I am of hearing that I don't exist,
That I am invisible,
That I am nuts,
Or that I do not matter
You say you don't believe in my disease
But it believes in me
Let's take stock of all my imaginary illness has given me
The gift of my experiences and the toll they have taken
I am allergic to most foods, and many medications but not really, my body just thinks it is
I am not a basket-case, but I feel like one
I have seen 10 doctors, or 20 or 50 or 100
None will give credence to me
I have every illness known to man except that which I truly have
According to them
I don't smile because my face has nerve damage
You interpret it as looking mean instead
I try to communicate but it is work for me
You think I have an attitude problem
I can eat only 5 foods for months at a time, or sometimes only one, but this isn't a diet
You don't understand and you make me feel bad about my food "choices"
I run screaming out of the store because the light bothers me
There is terrible bone pain
I can no longer use my limbs
I have no sex life
I suffer panic attacks and palpitations
I have a heart block, an arrythmia or chest pain
Fatigue so profound I feel like the walking dead
Hello you say on the phone in my moment of silence
Did I hear what you said? Forgive me I'm quietly seizing
Blanking out, momentarily ceasing to function
You hardly notice, you think me not listening
I wear sunglasses in the daytime not to be fashionable
I can't stand sound at any volume or I cannot hear at all
Motion sickness plagues me, my stomach my enemy
Turn me in circles and I get confused, disoriented, dizzy
I struggle to regain my physical strength
Desperate for human connectedness
A kind word, an understanding heart
Save me from this isolation I feel
An unwelcome blanket of silent uncertainty
You say I want for attention
Tumors appear in me for no apparent reason
My organs are failing while you call my blood work "normal"
My ears ring incessantly; my eyes no longer work or I can no longer see
My head hurts worse than any migraine I have ever had, even my hair hurts
I wince when you touch me, when you kiss me
I need reassurance but your embrace is painful to me
Or I find none at all, feeling your rejection from lack of support
Because I am too much work
Because you are tired
Or you have had a long day
You walk out on me
I have no value to you
Because you cannot relate
Strange sensations, odd tastes, smells that are not really there
I have lost my hair and not from bad hair genes
Lost weight, wasting away as nourishment escapes me
I feel biting, stabbing and jabbing pain in my body.
Nails of fire are burning my skin, a red-hot poker
Bugs crawling on and under my skin
They bite me relentlessly but I cannot see them
I am being eaten alive, from the inside out
Excuse me while I die, one cell at a time
My immune system is thwarted by something I cannot control
My brain manipulated, my body stressed
This thing controls every aspect of me, I see the world through a filter
My thoughts are dark, sometimes suicidal, you call me insane
Or elation, roller-coaster mood swings which have no meaning
I am so cold, hypothermic, or feverish, wet from night sweats or chills
My joints and muscles hurt, ache, throb, burn, and are swollen
Who are these people I am hallucinating? I know they do not exist
Yet I see them before me, standing there, threatening me
I am paralyzed, I am incontinent, I am a shell of the person I used to be
I can't breathe, or eat, and I can't think straight
Words fly out of my mouth that I did not choose
I am dyslexic, I am speech-impaired, I cannot speak at all
I forget where I am going, what I am doing, and who I am
I am confused and frightened
I lose my temper from nothing at all, and I fight with everyone for reasons I can't explain
The night hours are long and I cannot sleep, or I sleep longer than I should
I fall asleep in the daytime and need rest throughout the day
I am afraid of slumber, nightmares disturb my sleep
I stumble along, knock things over and fall
You tell me to be "careful"
I have no perception of myself in time and space
I cannot control my own movements
I am called disabled by some; others refuse to label me that
You accuse me of crimes I have not committed
Like failure to work
Failure to pay child support
Failure to show up places
Argumentativeness
Impatience
Like it is really a choice I would make
You reject me because I am unreliable
Because you don't understand
I am sorry I missed your family function
Or dinner party, or funeral, I was too sick to attend
You say I am not sick and my disease is but my imagination
I have rashes on my body that are hideous and uncomfortable
I cannot eat; my toilet is a valued friend
I am hyperactive, or a slug, laying about each day
I have trouble learning new things
Or remembering them
When you poke me with a needle, my blood won't flow
I am so tired of the tests, the needles and the drugs
The home remedies, the sure-fire cures
And emptiness of the unknown
I am spastic, I twitch, I jerk, I tremble, I shake
I can't lift a milk carton, or dress myself, or comb my hair
My teeth hurt, my gums and nose bleeds
I have bruises all over my body and I don't even know why
When I look in the mirror, I no longer recognize the image there
The person I was is now a shell of my former self
I have lost my children, friends and family because they just don't understand
Maybe I can no longer work, uncertain how I will survive
I've lost my livelihood, my home, my finances, my health, and my future
I cannot get disability because my illness is not on the list
Or maybe I have disability but it still doesn't help pay the bills
I have filed bankruptcy or live on the verge of it
I cannot get insurance because I am ill but no one will say that I am
I cannot go to doctors because they don't want me there
Or I have the wrong insurance
Or worse yet, none at all
Family courts have punished me
Taking away my children
They tell me I am playing games
Because I cannot work
Because I endlessly reschedule hearings
Because I struggle with my memory on the stand
You accuse me of heinous crimes
You ridicule my supposed disease
And chide me for not having proof
And take advantage of me
To get what you want, my children
Because you can and they let you
Because I am ill
Maybe you found me wandering in the street
Speaking insanity, out of my mind
You accused me and put me away
Shame on you
Yes I am still sick
Is this taking too long for you? I am sorry
I don't know if I can be cured
No there are no tests to see if I am well
I cannot find a doctor to treat me
Or diagnose me
Or care
This never should have happened
It could have been avoided
If you had just listened to me
And tried harder to help
I can no longer drive, walk, think, write, or function
What is a normal life?
I have a service dog
Or maybe I can't afford one
I can't stand up or walk straight
I am depressed I am alone
I am lost in a sea of despair because no one sees me
I am invisible though I stand before you
You close doors in my face and send me away
Because you don't want to deal with me
Because you say three weeks is enough and I should be cured
Or 10 days or 30 or 100
Or worse yet you experiment on me without knowing what or why
Because you are afraid of being a doctor
Of losing your license to practice
Hesitant to being compassionate
Or afraid to pass a Bill
To take governmental control
To assist your constituents
Because no one wants responsibility
To be forced to acknowledge that I am ill
Like it is some sort of a crime
I did not choose this disease
It chose me (oh lucky me)
To you I don't look sick, but I assure you that I am
Outside I look fine, but inside I am screaming
I am angry
I have a right to be
Let me explain
I am the forgotten
I have Lyme

©2006 by PJ Langhoff
a 14-year Lyme sufferer
www.lymeleague.com

Reprinted with my thanks and with written permission



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