Streams

Chloe Atkins on My Imaginary Illness

Thursday, January 27, 2011

Chloe G. K. Atkins tells us about her decades-long battle with a mysterious illness that doctors called imaginary. Her memoir My Imaginary Illness: A Journey into Uncertainty and Prejudice in Medical Diagnosis gives an account of being struck at 21 with a disease that paralyzed her for months at a time, and led her to become quadriplegic. Doctors refused to believe there was anything physically wrong with her and pronounced her symptoms psychosomatic. Atkins critiques contemporary medicine and talks about her frustration with doctors and diagnoses, psychotherapy, and her physical and emotional journey back to wellness.

Guests:

Chloe G. K. Atkins
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Comments [18]

Sara

Lyme disease. Don't trust the testS they are unreliable and Lyme can lay dormant in your body and treatment can be tricky and various by person. Watch under our son a Lyme disease documentary.

Feb. 18 2014 02:26 PM
Susan Hunter from Washington

To Lori from NJ

Please check out Periodic Paralysis

Jul. 08 2013 08:39 AM
Lori from NJ

I just read this book, and doubt anyone is still reading and adding comments. However, I still feel compelled to write. I spent two years seeking answers to some bizarre symptoms that no doctor could seem to identify. I spent nearly a half a century as a "normal" individual, with no known mental illnesses. After a variety of misteps and head scraching by the medical community, I was diagnosed with Lyme disease. Subsequent to an intensive round of antibiotics, I seemed to improve, then took a huge turn for the worse. I have been struggling ever since. Recently, I was told I had the classic signs of "fibromyalgia". I find this difficult to believe myself, but I do fit all the classic symptoms. The thing that dismays me the most is that not all doctors even agree that this is an illness. So here I lay every night, in pain, feet tingling, muscles twitching, numb spot throughout my body, etc. I have NO TRUST what so ever in the medical community. I still recall the one nurse who took down some information prior to my going in for a cat scan of the chest (I had serious chest pain). She says to me, "so what are you here for, a mass in the chest"!!!! I replied, "WHAT MASS IN MY CHEST?!!!". Turns out there was nothing to this, but really how can you be so stupid? Or the doctor that initially diagnosed me without taking any bloodwork with something called "parvo" disease. This disease is mostly found in dogs, but really diagnosing someone without taking bloodwork is simply outrageous.

May. 05 2011 11:59 PM

Correction of my post:
Chloe - One of the best immuno-suppressants is the HOOK WORM
[Correction: I should have said hook-worm.
(I had said tape worm) ].
It suppresses our immune systems so that we don't develop immunity to the worm. People co-evolved with HOOK worms, and now that sanitation has eliminated the parasite, many people suffer from auto-immune diseases, that tape worms would have suppressed.

I don't plan to infect myself for an occasional bout of hay fever, but if I had what you do, I might start walking barefoot through African latrines. WNYC broadcast two stories [Radio Lab & This American Life]
http://www.radiolab.org/2009/sep/07/
of a landscaper who cured his asthma by infecting himself with worms. He now sells them, but the FDA scared him away from the US, so you can't buy them here. He sells from Mexico, but not to the US. I don't have details handy, but this is on the web and probably in WNYC's archives.
I hereby give WNYC permission to give Chloe my email address if she wants help finding this info.

Feb. 13 2011 01:42 PM
Ken from Long Island, NY

I nearly lost control of my car when your guest identified Myasthenia Gravis as her final diagnosis after 12 years of frustration. As a neurologist whose sub-specialty is one of diagnosing and treating Myasthenia Gravis, I find it appalling (nearly unbelievable) that not one neurologist in either Canada or the US was able to identify this disease for a period of 12 years. There is only 1 reason for this to occur and that is a breakdown in communication.

I know this case was characterized as "atypical". The truth of the matter is that ALL CASES ARE ATYPICAL. I can count on one hand (with fingers left over) the number of textbook cases I have encountered in my professional career.

I was taught a very long time ago a rather valuable lesson. "If you take the time to listen to your patients carefully, they will inevitably give you the answer".

It's a shame that current healthcare trends have transformed medicine from an art form to a business.

Unfortunately, if things do not change, and change soon we are going to hear many more stories like this

Jan. 27 2011 06:55 PM
Jay from Chatham, NJ

Thank you for sharing your story of personal struggle and for addressing the topic of medical diagnosis in general. As an individual who has experienced mulitple chronic illnesses, I find it exhilirating that you have given so many, who would otherwise remain silent, a voice through the publication of your book. This is a critical issue that has the potential to impact anyone's life and I am eager for your work to make its way into the hearts and minds of our medical professionals. Thank you once again!

Jan. 27 2011 02:57 PM
Katherine from Queens

Chinese Medicine and acupuncture can also treat these types of cases and are of great benefit for those seeking treatment without the serious side effects of pharmaceudical drugs and invasive procedures of biomedicine.

Jan. 27 2011 01:27 PM

Chloe - One of the best immuno-suppressants is the tape worm. It suppresses our immune systems so that we don't develop immunity to the worm. People co-evolved with tape worms, and now that sanitation has eliminated the parasite, many people suffer from auto-immune diseases, that tape worms would have suppressed.

I don't plan to infect myself for an occasional bout of hay fever, but if I had what you do, I might start walking barefoot through African latrines. WNYC broadcast two stories [Radio Lab & This American Life] of a landscaper who cured his asthma by infecting himself with worms. He now sells them, but the FDA scared him away from the US, so you can't buy them here. He sells from Mexico, but not to the US. I don't have details handy, but this is on the web and probably in WNYC's archives.
I hereby give WNYC permission to give Chloe my email address if she wants help finding this info.

Jan. 27 2011 01:16 PM
Erica from New York

Thanks so much for this interview, terrific! I too have experienced the pain of having to suffer because of doctors poor understanding of autoimmune disease (I have multiple ones at this point) and general distain for use of immunosuppressants, yet are eager to prescribe me powerful anti-anxiety drugs and write me off as crazy. Little research or care seems to go to finding alternative treatments to help the immune system balance back to normal and many of us are stuck on the double-edged sword of immunosuppressants. This book should be required reading for all physicians! Thanks to Chloe for sharing her powerful story with us.

Jan. 27 2011 01:08 PM
Amy from Manhattan

Another aspect of this is that even w/a correct diagnosis of a treatable/curable disease, many dr's. think that once they give the patient the prescription, that's that--the patient will take the prescription according to the directions & everything will be fine. But often the instructions are written in terms lay people don't understand, or patients don't read beyond the dosage, & they don't take it the right way & don't get better.

Jan. 27 2011 01:04 PM

I have to say that this segment has gone on way too long. No matter how fascinating the details, there's only so much interest one can muster for someone else's medical problems. Though it's a real problem that doctors lose interest when they can't find a quick solution for medical problems amd tend to blame the patient.

Jan. 27 2011 01:04 PM
Hal Drellich from Crown Heights

I'm curious about the use of the word 'allopathic' in the 21st century. Bleeding and trepanation hasn't been used in a long time.

Jan. 27 2011 12:56 PM
Glenn from Manhattan

what does leonard know about compassion more than doctors do, as an arogant narcissistic microphone jockey? they teach more than leonard knows in medical school for sure.

Jan. 27 2011 12:56 PM
anonyme

Chloe - you can probably get rid of all of this if you look outside the medical box, now that you are off the tubes - there is so much creativity going on in the growing "wellness" community that there's no room for in medicine - one being Donna Eden's Energy Medicine - very simple - and she's married to a former prof at Johns Hopkins Med School for those who need validation from that angle, who travels with and teaches with her now.

Jan. 27 2011 12:55 PM
Bill from Hempstead

My sister had MS that was misdiagnosed in the 70's. I have interstitial cystitus which took a long time to be diagnosed. It is one of those diseases that has no known cause.

Jan. 27 2011 12:49 PM
Larry from Brooklyn

Conversion disorder is NOT another word for psychosomatic disorder. Psychosomatic is a physical symptom that originates from something like psychological stress (for example, a stress-induced ulcer or chest pain). Conversion disorder is the old traditional "hysteria."

Jan. 27 2011 12:47 PM
David from at work in midtown Manhattan

I have "typical" myasethia gravis also. I was lucky to get a diagnosis in 4+ weeks by seeing a neurologist, but do remember that the first medical person I went to told me that I had a psychosomatic illness also and needed a psych ward. !

Jan. 27 2011 12:47 PM
JBBdude

A similar incident happened with me in the past few years. I missed a year of high school due to a severe pain, and doctors quickly gave up calling it psychological (at least with that component). I went through psychology, psychiatry, hypnotism... Eventually, a chiropractor figured out that it was a muscle-related issue.
My faith in the medical establishment has been significantly shaken.

Jan. 27 2011 12:47 PM

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