To all my ladies with an invisible illness. ***UPDATE IN RED***

[Mashnut3161]

 http://chronicfatigue.about.com/od/forfriendsfamily/a/Things-Not-To-Say-To-Someone-With-Fibromyalgia-Or-Chronic-Fatigue-Syndrome.htm

everyone should read this. It applies to every invisible illness, and talks about all of them, not just MS. and MS is horrible and an ivisible illness that people who don't have understand, just like chronic pain and chronic fatigue and the side effects of epilepsy.

 

I created a Facebook page dedicated to Invisible Illness. I am trying to spread the word. Yes I know it seems pointless. But since I can't work or go back to school. I need a hobby and something productive to do. Besides just being a SAHM. I love that part of my life, But I have to have something else too. SO..

Its not much. I just started today. Anyone can add stuff. And if I missed an illness feel free to add it or PM the message box of FB it goes straight to my personal FB.

http://www.facebook.com/InvisibleIllnessLetsGetLoudAboutIt?ref=hl#!/InvisibleIllnessLetsGetLoudAboutIt

[MrsRi]

I have Lupus.  It's a pain in the ass because some people say those things constantly. 

[Anonymous]

Bump

[.Untamed.]

Thank you for sharing. All too often people will make rash judgments because the illness isn't in-your-face obvious---I've certainly struggled, and I can't say I've gotten very far when it comes to other people understanding.

[Scarlet_begonia]

I have fibro as well as bipolar...I am hyper sensitive to meds and have psoriasis and psoriatic arthritis flare ups so I'm not sure I'm getting the whole story yet. I'm late 20s, skinny, get called hot a lot. .. people just don't understand. I am in pain and soooo tired most of the time that not even the most ibuprofen and coffee can help lol. I work full time and have my daughter full time outside of daycare... leaving an abusive marriage...yay my life! Lol It's ok though I try to put a positive spin on things.. More of a vent really. ..

[Anonymous]

I really think I have an invisible disease but my doctor keeps brushing me off. Im always so exhausted, my body hurts all of the time, especially my joints. When I wake up my shoulders and neck are always sore, I never get a refreshing nights sleep. My lymph nodes seem to flair up a lot and the ones in my groin cause radiating pain in my legs which is another area I have joint pain in. I just never feel healthy it really sucks and im only 25!!! I wish I knew what was wrong with me.

I have sever anxiety that I can not control, I feel anxious and stressed at all times for no reason so I wonder a lot of thats causing my problems but who knows???

[Anonymous]

Arthritis SUCKS!!!

[opal10161973]

OMG.  If I hear one more person tell me to lose weight or diet, I will vomit on them.  That one really got to me.  I wish I could lose weight so bad.

I have FMS, RA, PCOS, and hypothyroidism. 

That lovely mix makes it nearly impossible to lose weight.  I mean, who the hell plateaus after a 20lb weight loss, when they weigh 300lbs?  Even the Endocrinologist couldn't help me. 

[Mashnut3161]

 

Quoting StarLight23:

I have PCOS which causes insulin resistance (which will later progress into Type 2 diabetes). I also have an Attention Deficit Disorder.

Nobody can see these and it's not fun when people think you're soo gosh darn healthy. You want to say .. I'm sick darn it..

 there is days I want to cry because people swear Im just being lazy, or call me a bad, lazy mom, because I can't participate in school stuff as much as I used to. I still go , I just have to sit the whole time. I can't walk around. my epilepsy is severe, my doctor said that my spine is almost completely clear in my xrays. I am in constant pain throughout my whole body. I have colon issues. any how. sorry.. People frustrate me too. It seems like they expect everyone that is sick to be pale and have shaved heads. ( not that there is anything wrong with that) But just because I look normal, doesnt mean I feel that way. You know?

[Mashnut3161]

 

Quoting Anonymous:

I really think I have an invisible disease but my doctor keeps brushing me off. Im always so exhausted, my body hurts all of the time, especially my joints. When I wake up my shoulders and neck are always sore, I never get a refreshing nights sleep. My lymph nodes seem to flair up a lot and the ones in my groin cause radiating pain in my legs which is another area I have joint pain in. I just never feel healthy it really sucks and im only 25!!! I wish I knew what was wrong with me.

 

I have sever anxiety that I can not control, I feel anxious and stressed at all times for no reason so I wonder a lot of thats causing my problems but who knows???

 I recommend getting a different doctor if you can. Or make yours listen.

[FooLynRoo]

ALthough I'm feeling much better these days, I suffered many years with undiagnoised hypothyroidism.

but its frustrating when your body doesn't do what your brain wants it to do.