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28 Reviews
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September 19, 2014

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September 19, 2014

This website chronicpaincrps.com is a brilliant website so much information and very helpful. As the writer says awareness to this debilitating condition needs to be spread. Having seen a person with this condition it most definitely needs to be brought to the forefront in the medical world. Even some medics are not aware of this condition. More research needs to be done to find a cure so that people can have a better quality of life without pain.
September 19, 2014

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September 19, 2014

I have a neurological spinal disease called Arachnoiditis.
100s of people have told me that I don't look like I'm in pain. While I appreciate the compliments, that doesn't take away the fact that most days I spend 60-80% of the day in bed bc of the excruciating pain.
We need more
awareness of Invisible Diseases!!
Thanks for spreading the word & helping others!

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When was your last experience with this nonprofit?

2014

September 18, 2014

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September 18, 2014

I live with several health conditions that have resulted in disability - none of them are visible. I live with people asking me why I must use the handicap parking spaces, when I obviously can walk. People have stopped me as I'm getting into a scooter at the store to ask me why I need to use it. Though I can spread the word that not all disabilities are visible, I can't reach more than a few hundred people through social media. The IDA reaches millions with its simple message that not all disabilities are visible. They provide links and references for people living with invisible disabilities, for caregivers, for medical professionals, and for everyone else.

I highly recommend that this message needs to be incorporated at the earliest level of our children's education. I am proud to be a supporter of the IDA.
September 18, 2014

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September 18, 2014

Anything that helps raise awareness, and helps us to feel we are not alone, helps to give us hope.
September 18, 2014

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September 18, 2014

The IDA has provided me with numerous links and references for groups and literature that have helped in many ways, from finding services I need to locating medical services.
September 18, 2014

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September 18, 2014

I have an invisible illness and thanks to IDA, more and more people are starting to understand what it's like to have to go through it. More doctors are starting to be more sympathetic and understanding but most importantly willing to treat us. So thank you.
September 18, 2014

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September 18, 2014

I follow this organization on Facebook because they provide needed information, support and a forum for people like me. I am able to tell others about my invisible disabilities and struggles, while also learning more about others like myself. We are able to give each other hope and helpful advice but most importantly to know that others care. It's heart wrenching to see how many people suffer from diseases that most people (including doctors) don't care about. Our suffering is real and debilitating and we want the world to know!
August 9, 2014

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August 9, 2014

Having struggled to get support for my hidden disabilities for many years and having had to face the oppression and humiliation by institutions and individuals at the same time. I can know breath easier knowing others understand and I am not alone.

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How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Likely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2014

August 9, 2014

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August 9, 2014

I look normal, but I have constant chronic Pain! I have been misdiagnosed labeled, and denied Medical Help. I was denied a simple accommodation so I could keep my job. I am tired of it! I found this page to be very helpful and inspiring. There are so many ignorant people out there. I have Back issues and can barely walk sometimes, yet I try to smile and act normal. I have ben denigrated, called names, repeatedly misdiagnosed, even told that my ruptured disc was a mental problem! Some of this by Doctors and Voc rehab counselors and even Social Workers! My Family even makes ignorant comments! I have pounds of MRIs and documentation, but it is meaningless. I had to fire my last PCP for not returning Phone calls and treating me like and idiot! The Misdiagnosis is still on my record, though the Doctor who Misdiagnosed me was busted for a coke problem. I have been lied about in court! By an Adult Protective services worker, who chose to look at my old misdiagnosis, illegally HIPPA would not follow up! ! It goes on and on! I have no rights! sometimes when they find out I am on SS Disability they assume I am slow, though I am mentally sharper than they are! I ask them if I should talk slower so they can understand! having this page makes me feel less alone! I have nerve damage now in my Arm, because my Doctors chose to ignore the physical symptoms and deny me an MRI! I was nearly paralyzed! I should not be walking due to the nerve damage but I ma through sheer force of will! If I did not dress and do yoga and laid on the couch maybe they would believe me. I am one of my Pain docs only patients that cracks jokes, it helps with the pain! We have no rights!

Ways to make it better...

If I had to make changes to this organization, I would...

More activism! We have no rights! we have no recourse when we get misdiagnosed or labeled with a Mental problem as we get worse!

More feedback...

How would you describe the help you got from this organization?

Some

How likely are you to recommend this organization to a friend?

Likely

How do you feel you were treated by this organization?

Okay

When was your last experience with this nonprofit?

2014

August 8, 2014

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August 8, 2014

I found this group through RSDS / CRPS site. People on this site are very welcoming and supportive of everyone else. Can get advise or just helping get over a bad day. Someone is always ready with a kind word and knowing you arent alone is great. Thanks for allowing me to be a part.

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2014

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