Do you have a health condition no one understands?

United States
September 2, 2007 11:22pm CST
For me its migraines, most people go by the myth that these are just headaches. While this may not seem like such a big problem on the surface, I just read that the inability or difficulty of others to understand Migraine has actually been a primary factor in divorce, loss of employment, and other very destructive and traumatic life events. Whether you call it "Migraine,' "Migraine Disease," or "Migraine Disorder," Migraine is actually, like epilepsy, a recurrent, episodic, genetic, neurological disease. What does that mean? It means that Migraineurs have a genuine neurological disease. There are doctors who actually aren't even educated about them - unless they're a neurologist and will tell you that they are caused by stress. To learn more you can go to MAGNUM's (the national migraine association) site: here:http://www.migraines.org/about/aboumiss.htm Part of the aim of MAGNUM To put an end to the myths and "wives tales" that Migraines are psychological, that they are caused by stress or the result of depression. Anyway - what health condition do you have that no one understands - do you have links that I and other readers can follow to try to learn and understand more? What kind of trials have you gone through as a result of you health condition and the attitude of others?
1 person likes this
4 responses
@AmbiePam (44598)
• United States
3 Sep 07
As a fellow migraine sufferer, I appreciate your efforts to spread the word about the severity of this condition. I have a couple illnesses that I don't feel people understand, but one that stands out is fibromyalgia. I picked that one because a doctor actually once told me it didn't exist, and the disease was all in my head. Well, of course, I never went back to him, but it is frightening that other people could suffer with this, and be told they are simply lazy or making things up. If anyone wants to know more about this illness, they can go to www.fibrohope.org.
1 person likes this
• United States
3 Sep 07
I will go there - thanks for the link - I had Epstein Barr as a teen and many doctors thought I was goldbricking until they figured it out...now I rarely get sick - just migraines and sinus stuffs...
1 person likes this
@AmbiePam (44598)
• United States
3 Sep 07
It amazes me that doctors really do feel that they are almost infallible when they disgnose someone. I looked at the site you listed and not only did I bookmark it, but I plan on sharing it with several other migraine sufferers I know. Thanks again.
1 person likes this
• United States
3 Sep 07
You can share it with those who say a migraine is a headache or you must be stressed if you get migraines. Doctors think they're little gods. There is so much they don't know. Especially about nutrition - its actually optional for doctors to take courses in nutrition. One person on here actually said she knew a doctor who told her father he should eat steak three times a day for his heart condition. So many illnesses can be helped by proper nutrition! Or prevented. Even migraines - well if one of your triggers is certain foods - nuts do it for me, and changes in air pressure and hormones sometimes and scents definitely and sometimes its a mystery - to me at least.
1 person likes this
@pendragon (3354)
• United States
3 Sep 07
I have sarcoid, celiac and diabetes.Trust me, no one gets it at all.I sometimes have trouble understading it all, and I'm in here with it. http://www.csaceliacs.org/celiac_symptoms.php http://www.diabetes.org/about-diabetes.jsp http://noairtogo.tripod.com/sarcoid.htm I'm sorry you have migraines, the pain must seem intolerable.Stay strong!!
1 person likes this
@AmbiePam (44598)
• United States
3 Sep 07
Celiac AND diabetes? That alone is enough to knock down the strongest of a person. I wish you all the best that I possibly can. : )
1 person likes this
@pendragon (3354)
• United States
3 Sep 07
It is appreciated! :)
@theprogamer (10543)
• United States
3 Sep 07
You've got my support Pen. I know those afflictions and combined... that's insane.
1 person likes this
@theprogamer (10543)
• United States
3 Sep 07
Well I use to have a very weak heart, and stress would almost easily put me in jeopardy. 4 years ago I was able to beat it. My heart was stronger and BP wasn't at weird levels. I still am cautious when it comes to stress even though my condition improved.
1 person likes this
• United States
4 Sep 07
First, I don't know if you meant it, but I appreciate you pun, "...I used to have a very weak heart...I was able to beat it. " You do have a strong heart that seems to beat for others.
1 person likes this
@theprogamer (10543)
• United States
6 Sep 07
Wow, I barely saw it until you pointed it out! :) Maybe you are right. Perhaps I wanted my heart to beat more for others and not for myself. I'm gonna have a nice time musing over this one! Thanks Arte! 10/10!
• United States
3 Sep 07
I have Fibromyalgia so I know what it is to have a condition that no one understands. It's not even classified as a disease because no one can figure out what causes it though most of us who suffer from it have a lot of similar stories. Most doctors who don't believe it exists use it as an umbrella term for any chronic pain condition. So when they figure out what's actually wrong.. ta daaaa.. they're cured. Those of us with true Fibro know that there is no cure. But because of those with faux-Fibro that get cured everybody seems to think there IS a cure. Personally I think doctors tend to not believe Fibro exists specifically because they can't figure out what's wrong or what to do about it. They feel helpless and that goes against the physicians ego, they just don't like being stumped, ergo it can't exist! LOL! Some logical thinking huh? I have had people tell me I was crazy, mentally defective, a hypochondriac, and say to me with a straight face that they can cure me. I'd like to punch each of them right square in the mouth. I think the biggest thing people have a problem with (non-medical persons), is the fact that we look perfectly normal. We don't look as sick as we are. I have learned to be an Oscar winning actress in covering it up and pretty much the only people who know I'm sick are my friends. Since they see me at home when I'm not acting they know how sick I am. Personally I think some poor woman way back when was responsible for the story of The Princess and the Pea.. it fits! Sorry that just popped in to my head for a second.. LOL. Here's a good site to learn more about it. http://www.fmnetnews.com/basics-symptoms.php I can sympathize with your migraines hon.
@AmbiePam (44598)
• United States
3 Sep 07
That's what gets me, they always tell me I LOOK fine.