Gaga talk about being "face" of Fibromyaglia

[Jenina 14,364]

So as of recently in the chronic illness and disability community, there's been a lot of talk about this lately. Lena Dunham recently started talking about how she has a connective tissue disorder and Fibromyalgia and wishes to be the face of Fibromyalgia. This has caused a lot of upset in the EDS(connective tissue disorder) and Fibro community. I thought I'd post this because I've seen quite a lot of comments saying if anyone was going to be the face it should be Gaga and praising her. I have both EDS and Fibro and I'd rather anyone over Lena so  

Some examples

 

 

 

 

Edit: Here's my opinion I guess. I don't want or think the illnesses I face or any illness for that matter needs or should have a "face". The fact that Lena wants to be the face is gross to me. You can use your platform to help others with what you're dealing with but her just being like I want to be the face doesn't seem like the right mindset. Someone with celebrity status who speaks out about their illnesses or others can be very helpful and that's what Gaga has been doing for Fibromyalgia so if there HAD to be a celebrity face I'd choose Gaga over Lena.

[Weasel 12,525]

Being the ''face'' of a disease is not really something fans should argue about between fanbases 

[Jenina 14,364]

Just now, Weasel said:

Being the ''face'' of a disease is not really something fans should argue about between fanbases 

This is the chronic illness community discussing Lena's claims of wanting to be the face of fibromyalgia. None of them are fan accounts and I just came across a lot talking about Gaga so I thought I'd mention it.

[That J 12,166]

6 minutes ago, Weasel said:

Being the ''face'' of a disease is not really something fans should argue about between fanbases 

So agree!  

Diseases are something that's above a face. You dont model them like designer dresses. 

I find this, as a person with a life altering illness, to be insulting. 

We dont need a face.  

We need cures. 

[That J 12,166]

Take the money for the face and put it on the cures and if artists wish to speak out, great.  

We dont care.  We just wanna feel better. 

[That J 12,166]

7 minutes ago, Jenina said:

This is the chronic illness community discussing Lena's claims of wanting to be the face of fibromyalgia. None of them are fan accounts and I just came across a lot talking about Gaga so I thought I'd mention it.

I know you suffer. I respect your feelings. I just feel we dont need THAT. 

I get it but can the focus be on the cure and not the STAR that saves us?  Because they wont.  

[JohnnyVersace 8,539]

Gaga's got enough going on and has spoken out about the issue, and brought a lot of attention to it. Y'all really need her to be the "face" of fibromyalgia?

Go off, I guess. 

[That J 12,166]

Want a face?

Hi my name is Jay and I have end stage liver failure. 

You can find MY face on twitter 

@james0479 

bam. A real person dealing with a real thing.  

[Jenina 14,364]

Just now, That J said:

I know you suffer. I respect your feelings. I just feel we dont need THAT. 

I get it but can the focus be on the cure and not the STAR that saves us?  Because they wont.  

Oh I completely agree. The face of chronic illness should be the people who live with the chronic illness. Lena came out and said she wants to be the face for this and what I found these are saying is that if there HAD to be a celebrity face it'd preferably Gaga.

[That J 12,166]

2 minutes ago, Jenina said:

Oh I completely agree. The face of chronic illness should be the people who live with the chronic illness. Lena came out and said she wants to be the face for this and what I found these are saying is that if there HAD to be a celebrity face it'd preferably Gaga.

I get it and I'd agree but...

Idk...

I think I dont like that Lena came out saying something needed a face.  And I dont trust hers anyway but thats just me.

The idea that disease should be modeled is grotesque and she should be ashamed for suggesting so. 

That right there tells me she doesnt get it. 

[GypsyBabe 22,836]

Gaga is the face of my fibromyalgia and autoimmune issues as she definitely boosts my confidence when I am having a hard day. Nothing wrong with that.  Similarly, it is interesting that so many GP comments suggest Gaga instead. I guess that she is an inspiration to others, not necessarily fans, who struggle with chronic illness as well. 

[That J 12,166]

Ya either care or ya dont.  

No face changes that.  

[That J 12,166]

1 minute ago, GypsyBabe said:

Gaga is the face of my fibromyalgia and autoimmune issues as she definitely boosts my confidence when I am having a hard day. Nothing wrong with that.  Similarly, it is interesting that so many GP comments suggest Gaga instead. I guess that she is an inspiration to others, not necessarily fans, who struggle with chronic illness as well. 

She inspires me all day everyday and I'm glad shes helped you in that form too.  I wish she could cure me  lol. But I adore her.  

Much love xoxo

[Jenina 14,364]

1 minute ago, That J said:

I get it and I'd agree but...

Idk...

I think I dont like that Lena came out saying something needed a face.  And I dont trust hers anyway but thats just me.

The idea that disease should be modeled is grotesque and she should be ashamed for suggesting so. 

That right there tells me she doesnt get it. 

I mean yeah that's exactly my feelings towards it. I don't know if you misinterpreted my opinions on it because that's exactly how I feel about it lmao. I don't want or think the illnesses I face or any illness for that matter needs or should have a "face". The fact that she wants to be the face is gross to me. You can use your platform to help others with what you're dealing with but her just being like I want to be the face doesn't seem like the right mindset.

[GypsyBabe 22,836]

Just now, That J said:

Ya either care or ya dont.  

No face changes that.  

Yes but a face gives a relatable voice to a disease. It's a shame that we need one to begin with, but people don't know the health struggles of their neighbors. A "face" raises awareness and education on other individuals pain.