Whitney Dafoe Updates

Open Medicine Foundation

Whitney Dafoe Commemorates his 37th Birthday with a Message of Hope
This Saturday, October 3rd, Whitney Dafoe marked his 37th birthday. Please join Open Medicine Foundation (OMF) as we celebrate Whitney, and his remarkable courage, strength and resilience…

Whitney is a selfless advocate, fighting for people with Myalgic Encephalomyelitis (ME / CFS) everywhere. Serving as a symbol of hope while pushing for change, Whitney continues to give back to the community despite his own devastating battle with this illness.
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Please give Whitney the gift of hope, by donating generously to his birthday fundraiser today: http://spot.fund/FindaCureForMEcfs
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https://www.omf.ngo/2020/10/05/wishing-whitney-dafoe-a-happy-birthday/

 
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.
 
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Awareness Starts With Us

I was inspired by the movie Milk about Harvey Milk. He gathered his early group of gay men and told them they had to come out of the closet despite the prejudice they would face because every person they didn’t tell was someone who didn’t know they personally knew a gay person which puts a face to it, humanizing it, making it harder to be prejudicial.

"Every gay person must come out. As difficult as it is, you must tell your immediate family. You must tell your relatives. You must tell your friends if indeed they are your friends. You must tell the people you work with. You must tell the people in the stores you shop in.

Once they realize that we are indeed their children, that we are indeed everywhere, every myth, every lie, every innuendo will be destroyed once and all. And once you do, you will feel so much better."
Harvey Milk

"Rights are won only by those who make their voices heard"
Harvey Milk

"We will not win our rights by staying quietly in our closets"
Harvey Milk

I have thought for some time that ME/CFS is in a similar place as the LGBTQ community was back then. Honestly we’re probably worse off because we’re so sick we can’t even live some sort of private life like an LGBTQ person could. But it doesn’t matter it’s similar and we can learn from history.

This is one of the reasons I decided to "come out" about having ME/CFS on my photography website.
http://www.whitneydafoe.com/news

I thought that not only would everyone I know learn about the illness but people who found my website would also see it. They would hopefully connect my photography work with an ME/CFS patient and make it more difficult to de-humanize me with all that artwork staring them in the face. All horrific acts in the history of humanity have been done by dehumanizing a group of people. From prejudice to genocide. So we need to humanize ME/CFS. This is how real awareness will begin.

Let’s learn from history. Awareness starts with us. We can no longer sit around waiting for other people to spread awareness about our illness or worse, lying to the people in our lives to avoid discomfort and prejudice while privately complaining about the lack of understanding or awareness on ME/CFS social media (which might feel good but accomplishes nothing).

There are exceptions of course. Many of us are dependent on people and doctors who don’t understand and in these cases it may be necessary to minimize use of the ME/CFS diagnosis in order to continue receiving the care you need both at home and from a doctor in order to survive. Feel no shame in having to do this and know how sorry we all are that you have to.

I’ve been lucky in this way. Yes I’ve had lots of horrible experiences with prejudicial doctors and friends but my family truly understands that I have ME/CFS and that it’s a horrible disease. And I’ve been lucky enough to eventually find doctors who understand as well.

I tell everyone, and I use both names (ME and CFS). I’m not afraid of telling anyone that I have Chronic Fatigue Syndrome. If they judge me they can fuck off.

Remember - every person you don’t tell that you have ME/CFS is a person who doesn’t realize they personally know someone with the illness or worse doesn’t even know the illness exists.

A huge part of the reason there’s so little awareness and funding is because patients so often hide their illness from the people in their lives. They do so because of the prejudice they experience but in the long term, it only perpetuates it. It’s time to stop the cycle. If you’re in a position where it’s physically possible, even if it’s uncomfortable, tell the people in your life.

Whitney Dafoe Davis
Source: https://bit.ly/3iNF6RT
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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 said:
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.
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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?
 
Rain said:
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?
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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.
 
Mij said:
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.
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I think we can each only speak for ourselves. My friends, family and former colleagues all knew/know my diagnosis, but most know very little about it, and I have not helped by trying to 'act normal' back when I was working, and socially, leading to considerable misunderstanding of the level of disability.

I hate boring people with my symptoms. If they ask how I am, I usually just thank them for asking and say something inane, like 'much the same'.

Sharing a few good articles on Facebook has helped a bit, though most don't read them.
 
Mij said:
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.
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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).
 
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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.
 
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strategist said:
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).
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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.
 
Mij said:
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.
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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
 
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