Whitney Dafoe Updates

Merged thread

Awareness Starts With Us

> All horrific acts in the history of humanity have been done by dehumanizing a group of people.




note:

facebook seems to make the page disappear for those not using facebook / who will never use facebook / who cannot use facebook. in addition, s4me seems to show blank space instead of the link for those who don't use js.

thus, posting the full text here would be good, if it is ok to do. i got the article from @tomkindlon on co-cure but the email encoding introduced glitches like "didn=E2=80=99t". it's ok to edit this post to put the full text in if any moderator wants to.

 

I've never hid my illness and have never gone into great detail about ME only because it's too complicated to explain PEM, not because I feel ashamed or judged. I have been dismissed by one or two doctors because they didn't believe ME was a lifelong illness, they understood PVFS though.

Comparing it to the experiences of the LGBT community is a bit . . . odd?

 

Mij at what age did you get ME/CFS?

 

29. I hope I didn't offend anyone with my message. I guess comparing it to the LGBT experience made me react.

 

A highly decorated gay’s right activist from UK disagree with you. I guess this is where Whitney got the idea of comparison from...

https://twitter.com/user/status/772035205695672320


https://twitter.com/user/status/773907603311169536

 

https://twitter.com/user/status/1324770194259140610

 

I don't think the reason that there is little awareness and funding for ME is because we are 'hiding' our illness from friends and family.

We need a little more perspective here.

 

Do you truly feel like you can talk about your illness/get as much understanding/support from your surroundlings like a friend with more known/understood illness? Do you feel like you can ask your surroundings to support ME research just as freely as a Cancer patient? MS? Lupus?

 

Yes I do, and I certainly wouldn't be disowned or made to feel ashamed because I have an illness that is still not well understood. I have never been threatened or felt the need to hide because I'm disabled. No one in my life has ever accused me of choosing to live a 'lifestyle' of ME.

I am not understanding the comparisons being made between ME and LGBT community experience.

 

@Trish

I've had several ppl tell me, "I have CFS too, or a friend had it and tried . . . and got better" Thanks to the stupid name. That would be the main reason for me to avoid mentioning it.

 

Patients are definitely hiding, downplaying, not talking about their illness, and it's definitely harming us.

They are definitely pressured (by people uncomfortable with reality) to just behave normally even when that is not possible.

Family is definitely telling patients how disappointed they are with them (in a futile attempt to motivate them to try harder to make something out of their lives).

 

Well, as documented above: LGBT/Human Rights veteran Peter Tatchell brought it up without even being encouraged to do so... I think that settles it.

 

[refers to a poster who has since deleted their post]

I am so sorry you experienced this! That is cruel. How common is this?

I have encountered dismissiveness and "condition your life around it" comments, but I've never been bullied or abused because I was sick or had ME by anyone.

 

Very, very common.

 

Are you referring to children or young adults who haven't established themselves yet? If that's the case then the parents are abusive- period.

I mean, I was an active productive adult before becoming ill, and my family (who know who I am) would not question my illness if I could no longer work or study because of illness.

 

Well I studied at uni and worked, and the first years after disease onset was a nightmare cause many family and friends thought i was mentally unstable

I know so many who goes through so much prejudice, so you cant generalize your own experience here