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

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 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

by on Nov. 8, 2012 at 9:02 AM
Replies (41-50):
Ber-Lynn
by Count Me In on Nov. 9, 2012 at 12:17 AM
I have Charcot Marie Tooth Disease, neuropathy, arthritis, bone spurs in both hips and my right hip I am having a total hip replacement in December. It gets frustrating when people don't understand especially since I am only 23.
ginger813
by on Nov. 9, 2012 at 12:19 AM

thank you for posting this. I am in the process of getting diagnosed with fibromyalgia (my rheumatologist said she's certain that's what I have, but needs to do some more tests before giving me a firm diagnoses). I  have been suffering for years, and no one seems to understand. My dh tries to be understanding, but he doesn't completely get it. My mom has lupus, so she's about the only person I know that I can really talk to about this stuff.

cjsix
by Platinum Member on Nov. 9, 2012 at 12:25 AM

 

Quoting Mashnut3161:

 Im going to take a risk here. But there are people posting anon. I created a group for us. Kinda a support group, where we can go and chat and help each other. I hope I don't get in trouble for putting the link out in another group. I just don't want to go to each person individually.

http://www.cafemom.com/group/116360

 Is the group set up as private? That would allow safety with sharing.

Mashnut3161
by on Nov. 9, 2012 at 9:02 AM

 

Quoting cjsix:

 

Quoting Mashnut3161:

 Im going to take a risk here. But there are people posting anon. I created a group for us. Kinda a support group, where we can go and chat and help each other. I hope I don't get in trouble for putting the link out in another group. I just don't want to go to each person individually.

http://www.cafemom.com/group/116360

 Is the group set up as private? That would allow safety with sharing.

 yes it is.

Mashnut3161
by on Nov. 9, 2012 at 9:13 AM

 

Quoting ginger813:

thank you for posting this. I am in the process of getting diagnosed with fibromyalgia (my rheumatologist said she's certain that's what I have, but needs to do some more tests before giving me a firm diagnoses). I  have been suffering for years, and no one seems to understand. My dh tries to be understanding, but he doesn't completely get it. My mom has lupus, so she's about the only person I know that I can really talk to about this stuff.

 my DH's way of understanding is calling me his old fixer upper( like a car). One that he can keep on the road but will never get perfect. I know he loves me. But I also know he is just scared. We didin't think that I would have all the medical issues that I have. We knew my heart would be an issue. It has been since birth. But This is a convo ment for the other group. Just follow the link.

Mashnut3161
by on Nov. 9, 2012 at 9:15 AM

 

Quoting Ber-Lynn:

I have Charcot Marie Tooth Disease, neuropathy, arthritis, bone spurs in both hips and my right hip I am having a total hip replacement in December. It gets frustrating when people don't understand especially since I am only 23.

 Im only 29 and I know exactly how you feel. I hear people tell me all the time that I have to be lieing because Im too young. Last year when I was referrered out to a couple specialist. I switched to different ones because the first 2 told me that nothing could be wrong because my age. that I was paranoid.

Mashnut3161
by on Nov. 9, 2012 at 9:16 AM

 I will introduce myself with all my issues in the other group. It just seems easier over there.

ginger813
by on Nov. 9, 2012 at 9:21 AM

your siggy isn't clickable. Is it a group just for people with epilepsy, or all invisible deseases?

Quoting Mashnut3161:

 I will introduce myself with all my issues in the other group. It just seems easier over there.


momof3jam
by Platinum Member on Nov. 9, 2012 at 9:21 AM

I adore this post. I have epilepsy. I did my first 5k a few months ago and have recently started accepting the fact that it's part of who I am (not all of who I am) and am less embarassed about it. While I don't shout it from rooftops, I no longer keep it a secret.

Epilepsy doesn't get much attention, and I'm glad someone else out there shares my concerns.

wolfinhell
by on Nov. 9, 2012 at 9:22 AM

And also very high chance of becoming violent. My step father has it and I worry for my mom and 12 year old sister and 10 year old brother as he isn't taking medication.  Even my grandmother who is a nurse assitant says that one day he is going to snap and kill mom and my siblings.

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