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jeep_qirl in crampingmystyle

Endo 101

A LETTER TO THE HEALTHY WORLD FROM THE LAND OF CHRONIC PAIN AND FATIGUE

If you were born with healthy genes, you may know me, but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain. I was diagnosed with Endometriosis after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.

WHAT YOU SHOULD KNOW ABOUT ENDOMETRIOSIS

~ Endometriosis is not the newest fad disease. In fact, it isn't even new.

~ The many physical and emotional problems associated with Endometriosis are not psychological in origin. This is not an "all in your head" disease. In fact, the American Medical Association recognizes Endometriosis as a major cause of disability.

~ Diseases like Endometriosis strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME

~ My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my abdomen, but tomorrow it may be in my back, stomach or be gone. It is not well understood, but it is real.

~ My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my body beyond it's capability.

~ My immune system - My body is constantly fighting the Endometriosis, which means it is less equipped to deal with simple things, like the common cold. Because of this, I catch every virus that I come into contact with, and while it may have just been a stuffy nose to you, I will likely become very ill. Colds & flu take months for me to recover from, instead of days or weeks that it takes someone like you.

~ My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. I can't stand heat, either. Or humidity. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it. I may get motion sick, or lightheaded in cars or in large groups of people. I cannot tolerate drastic changes to my environment. No, I am not a 'drama queen'. I would give anything to not to be so affected by these things that others see as trivial.

~ My mood swings - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from Endometriosis as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

~ My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I am not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

~ My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from chronic pain and fatigue and a disease with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

~ My uniqueness - Even those who suffer from Endometriosis are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on Endometriosis.


Comments

Thank you so much for posting that
You're welcome :) It's actually from an entry I made in my own journal back in 2005, but I thought it would be a good way to start off the community :)
thankyou for posting that
i posted it into my own journal and emailed it out.
*hugs*
You're very welcome! :)
*hugs back*

December 2006

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