I Thank You

When I uploaded my Crash Day 3 video on Monday, I was scared. In fact, I almost didn’t do it. I can’t control the fact that I have crashes, but I can control who sees me that way. Like most people, I withdraw when I feel lousy. The suffering that comes with the worst days of ME/CFS is not something that I have ever wanted to display in public. I originally recorded the video in order to submit it to the FDA comment docket. But after I did that, I thought maybe it was worth sharing with you because it might be similar to what other patients experience. I felt very vulnerable putting it out there, but it seemed like the right thing to do.

Wow. Just . . . Wow! Your response has been incredible, and far greater than I anticipated. The video has 893 views on YouTube as of today. There were 388 hits on the blog on Monday, rising to over 1,000 hits yesterday. You’ve been sharing it on Facebook, on the forums, on Co-Cure, on Twitter, and your own blogs. And your comments – here on the blog and on Facebook and by email – have been overwhelming in kindness and support.

I thank you from the bottom of my heart. It felt like I was taking a big risk, but you caught me when I took that leap of faith. You reminded me I am not alone, and you used my video to help teach others about this disease. Not only do I feel supported, but we’ve turned this crash into something meaningful and productive! So keep sharing the video and keep the conversation going. And please know that you have my deepest gratitude for the love and support you have given me this week.


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5 Responses to I Thank You

  1. Melissa says:

    Jennie, I’m so glad you took a leap of faith and posted the video of your crash. I’m the queen of “withdraw when I feel lousy”, so I can certainly understand your apprehension! You did a brave thing, and I’m thrilled with the overwhelming response you’ve received. I also want to send a big thanks to everyone who shared the video.

  2. Tina says:

    Jeannie, I appreciate your putting it out there. I have considered doing the same. However, I still have clients. Being competent in communications work doesn’t match the near-death look I have when I am at my worst. However, I did have a photo of my lounging on my back porch public. While to the public, I looked like I was just resting, another ME/CFS person would notice that I was not holding my head up. I notice that in other patient pictures. It’s an unnatural resting of the head or leaning on something or against a wall.

    Anyway, I understand those who still have to work, even part time, if they don’t want their worst days public. However, if it wouldn’t hurt my ability to earn much-needed money, I’d be fully exposed to let people see it. I do let my clients know I have it. As long as I produce, that’s fine. But, it could hurt the image of, say, a store if their marketing person is all over the Internet sick-looking.

  3. Anne Boyd says:

    I was thinking of suggesting that more of us do short crash videos – no rants, just a straightforward accounting of what a crash is and what it looks like – but I realize that if I suggest that I’d have to do one too. I have no work-related reasons to avoid it, since I can’t work, but it would definitely be hard on my ego to display myself looking that bad. However, I do think the world only seeing me when I’m momentarily pulled-together is misleading, and probably contributes to misunderstanding of the disease.

    Tina, you’re absolutely right about the head-resting thing – I am very conscious of myself doing this, especially since I’ve had terrible neck problems secondary to head-flopping. On the few occasions when I go to a restaurant or over to someone’s house, I always look for the seat where I can lean my head on something. Same with standing – even though my POTS is partially controlled by medication, I still can’t stand long and will find a wall to lean against whenever I possibly can. Even for people without POTS there is a lot of muscular effort involved in standing upright, which runs down our batteries just like all other forms of exertion do.

  4. Waiting says:

    The group “ME Australia” (http://www.changeforme.net/) posted some of these good day/bad day photos. The now defunct Facebook site “XMRV Global” posted a link from them once.


  5. floydguy says:

    @Anne Boyd

    If somebody aggregated the videos, the faces could be blurred.

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