US - The Sleepy Girl Guide to Social Security Disability

[Sly Saint]

For people in US

This guide is designed for anyone who is homebound and for people with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Lyme Disease, POTS, Multiple Chemical Sensitivities, Fibromyalgia, and other invisible illnesses.

A lot of information
https://howtogeton.wordpress.com/social-security-disability/

 

[Denise]

For people in US


A lot of information
https://howtogeton.wordpress.com/social-security-disability/

The rest of the site also has additional info for US based folks on housing, medicaid, travel (for those who can), long-term disability, etc
https://howtogeton.wordpress.com/

 

[Trish]

Some members discuss their experiences on this thread:
Ordeals and the Empathy Gap
Solve webinar on this thread:
Navigating Public and Private Disability Insurance with ME/CFS

 

[Arnie Pye]

I haven't read the links, but that title referring to "The Sleepy Girl Guide" is incredibly condescending. Would anyone ever describe anything medical as "The Sleepy Boy ...". The medical profession routinely infantilises women, and this kind of sexist title needs to stop. I wouldn't have minded "The Sleepy Woman Guide..." so much, but even that is bad.

Did the name "The Sleepy Girl" originate with a blogger?

 

[Shadrach Loom]

I haven't read the links, but that title referring to "The Sleepy Girl Guide" is incredibly condescending. Would anyone ever describe anything medical as "The Sleepy Boy ...". The medical profession routinely infantilises women, and this kind of sexist title needs to stop. I wouldn't have minded "The Sleepy Woman Guide..." so much, but even that is bad.

Did the name "The Sleepy Girl" originate with a blogger?

It’s what the admin of the howtogeton wordpress site calls herself. She’s put a very comprehensive site together.

 

[Arnie Pye]

It’s what the admin of the howtogeton wordpress site calls herself. She’s put a very comprehensive site together.

Thanks for the info. I thought it might be something like that. I have to say, I hate the name, no matter how good the site is, but then my opinion is of zero relevance in this.

 

[Shadrach Loom]

Very sadly, it seems she is no longer with us. Her name was Lily Silver. What a legacy of advocacy support to leave behind, though.

https://www.kudoboard.com/boards/hLGkiDf9

 

[livinglighter]

Her website has been invaluable to me.
She gave me and my family hope when we came across the website recommending tests for pwME. I’m so sad to have learned she has passed away.

 

[Hutan]

@Madbeggar, @Yessica - are you aware of the site linked in the first post? Maybe there is something useful there?

There seems to be a major gap in support for people with ME/CFS in the US.

I'll make an In Memory thread for Lily Silver, it sounds as though she was a lovely person. Thread here.

 

[Yessica]

@Madbeggar, @Yessica - are you aware of the site linked in the first post? Maybe there is something useful there?

There seems to be a major gap in support for people with ME/CFS in the US.

I'll make an In Memory thread for Lily Silver, it sounds as though she was a lovely person. Thread here.

Thanks Hutan! It's an amazing site. I've been using it for years. So thankful for Lily and all the work she put into this. So sad that she's gone.

And thanks @Sly Saint for posting this!