Funny things they said..
But not so funny at the time!
Having Lyme disease is a testing illness. Testing for the doctor – let’s face it, they only have 10 minutes or less to be able to work out what’s wrong with a patient who seemingly has every symptom imaginable!
Testing for the patient too – imagine suffering at home, day in, day out. Not being able to hold down a job. Not being believed by the family. Feeling dreadful and not understanding where all this pain and fatigue is coming from and why the body is unable to get better despite rest and ‘sensible’ eating. So a trip to the doctor it is, waiting in a waiting room for what seems like hours, sometimes passed around from consultant to consultant, only to be ridiculed & made to feel worse at the end of the day!
I do fully believe that both patients and doctors can make things better with a bit of humour & here I’d like to portray some of the humourous things that have been said to Lyme patients around the world. Bear in mind, that at the time, these were NOT humourous at all and certainly didn’t help the patient feel any better.
Here are just a few comments heard by Lyme patients in a doctor or hospital setting:
A patient in Ireland was told “there is no Lyme in Ireland” leaving her to develop chronic Lyme from an untreated early stage infection (complete with bulls-eye rash).
A young lady was told her Lyme symptoms were because she was “just a mom, getting older, part of the aging process” (at age 32!)
“You don’t have neurological symptoms” – a neurologist said to a patient with numbness, tingling, tremours & hyperreflexia!
A mum reported to me that her son was terribly ill from several infections tick-borne infections including Lyme, Babesia and Bartonella. He was told -“You are perfectly healthy; you could just stand to lose a little weight!”
A patient hobbled painfully into the surgery the GP said “Of course you can walk perfectly well; you walked in here didn’t you?”; the patient recalls “we argued for a while, then I got up to leave and for the first time ever fell flat on my face. The GP walked out and left me there scrabbling around in shock on the floor”.
And another one – “Go home and get plenty rest. These things rarely last more than 12 months”. The patient was already ill for four years!
A lady was told she can’t possibly have chronic Lyme disease so “It must be Lupus”.
A military doctor told a Lyme sufferer “You’re not sick, you’re bored”.
Another patient explains: “In the past month I have been accused by Dr’s of the following: Having HIV instead of Lyme because I’m gay, that I’m trying to not work because I can’t get along with my coworkers (who I LOVE), that I have a history of mental illness because I was treated for Seasonal Affective Disorder, that nothing is wrong it’s all caused by my addiction to medication, and finally that it’s “all in my head”.”
A friend of mine was told by a doctor “stop wasting my time”. Sadly when a patient is STILL ill they will return to the doctor only to be met with utter annoyance!
A patient after receiving tests in a hospital was told – ”’The good news is your blood tests are all normal. So why are you in that wheelchair?”
A patient with neuroborreliosis had an MRI showing 2 lesions on the brain. The Neurologist said “It’s definitely not MS, I’m sorry I really don’t know what it is, I think you should try doing some Yoga”!!!
Another patient was refused a thyroid test by a GP despite the patient (who was a nurse) request. Six months later she was in hospital for two weeks with a diagnosis: Hashimoto’s Hypothyroidism.
A lady with a bad back was told to lose weight, when she went back in still complaining of pain she was told it was because she had lost too much!
Another sufferer was told “You don’t have a thyroid problem, so clearly you should just watch what you eat a bit better…after all, you are middle aged” to a patient who had swelled up the size of three new born babies, in about 4 weeks!
How about “You can’t get lyme disease in Bolton (Lancashire, UK)” from a occupational health doctor to whom “travel” was an alien concept – which was strange considering the fact that he was a Scot working in Lancashire.
And finally – a dentist to an ME patient (which later turned out to be stage 3 Lyme) – “Well we all have a blip now and again”.
For some more patient stories and doctors comments why not check out PJ Langhoff’s great book “It’s All in Your Head” Around the world in 80 Lyme Patient Stories?
Published by Allegory Press, the stories span many continents around the world and are but a mere selection of hundreds of patient’s stories she received while publishing her book. A Lyme sufferer herself, PJ I has written several other titles, including the following:
(Some of these titles are available in E-book format).
It’s All in Your Head Part I
It’s All in Your Head Part II
Baker’s Dozen & the Lunatic Fringe
God Science – New release Feb 2011
Jordan and the Naughty Camels – children’s story & colouring book
The Singing Forest, a Journey Through Lyme Disease
Right Behind You, Spiritual Helpers from Beyond the Earth Plane
For ordering details go to: http://www.allegorypress.com/books.html
I finish this blog with a plea for help: There is an urgent call for family and friends to consider donating their bone marrow (sadly Lyme patients cannot apply). More details as follows:
Please Help Give the Gift of Life to Jordan Jemsek
Jordan is just 6 years old and has been fighting Acute Myeloid Leukemia for the past year and a half. She is in need of a bone marrow transplant and there are no matching donors in the national registry. Her father is a leading physician for patients with Lyme disease and HIV/AIDS.
NASCAR’s Bobby Labonte and his team members from JTG Daughterty Racing came all the way down to Charlotte, NC to Presbyterian Hemby Hospital just to visit Jordan and to lift her spirits, even though they have an upcoming race! They also put Jordan’s photograph on the back of their 47 car…….along with a web site address to help raise awareness for Jordan’s plight.
Here is a video of their visit from last Monday, shown on Speed TV.
There will be a bone marrow donor drive March 5, 2011 in Charlotte, NC at St. Gabriel’s Church. The family is scottish/irish/ukranian for the best match, although every one who donates can potentially save a life. A pain-free cheek swab is all it takes to find out if you are a match for Jordan. The kits can be sent free with registration at www.marrow.org
To find out if you are a match for Jordan and others like her, please consider taking a simple cheek swab test today.
You can give the gift of life!
For more details hop to Allegory Press or why not check out PJ’s book “Jordan & the Naughty Camel’ written especially for children with difficult illnesses like cancers and leukemias.
Proceeds of the book sales go to Presbyterian Hemby Children’s Hospital in Charlotte, NC.
Donors in UK & Ireland will need to approach their local organisation. However, these organisations are linked around the world so a perfect match may still make it’s way to help this very brave little girl. Please spread the word!