We Are Visible (Too) - Episode 1: Sarah Rightmire

We Are Visible (Too) is an ongoing mini-film series portraying people with EDS all across the globe. In this mini-documentary series, we will continue on the We Are Visible - a feature-length film about people with EDS - journey and add a variety of 5 - 10 minute videos of other people across the country that live with Ehlers-Danlos syndrome to the channel.
In Episode 1, Sarah Rightmire shares her EDS story. Sarah is a young woman with Ehlers-Danlos syndrome, mast cell activation, POTS and many other comorbid conditions who struggles with the stereotypes others have of her as an invisibly disabled young woman. She is 23 years old, currently finishing her psychology and disability studies degree at Chapman University and lives in Santa Ana, California.
This video is part of our monthly Chronic Pain Partners Post, a newsletter featuring articles and videos about all things EDS. Please sign up for the newsletter here: www.chronicpainpartners.com/e...
[Accessibility information: All our videos are available with closed captions; some have descriptive audio, for example, the feature film We Are Visible in its original English version. Sarah’s film is only available with English captions.
Written video description: At the beginning of the video, a text appears: Chronic Pain Partners presents We Are Visible (Too): Sarah’s Story. Then a short video with a black-and-white comic-like effect appears. In this video, Sarah, a woman with long, curly blonde hair, plays with her black dog. The dog kisses her face. The comic-like effect fades into a real-life video. In the next shot, Sarah sits on a white couch in her bedroom, with a bed in the background. She wears a red shirt and has brown eyes. Text: Sarah Rightmire, 23 years, Orange, CA. Before the second question, the same comic-like black-and-white effect appears, but this time Sarah sits quietly on her couch and looks into the distance. Text: How did you get diagnosed? Then the comic-like effect fades again. When Sarah talks about her EDS journey, a variety of pictures of her appear. A young Sarah on her bed, cuddling her dog; another young Sarah sitting on her bed; a family photo of Sarah, her brother and her parents; several photos of Sarah in a hospital bed and in a wheelchair. In between, we see Sarah’s interview in the same setting on the couch with a red shirt. After this question, we, again, see a comic-like black-and-white effect of a video with Sarah sitting on a couch cuddling a zebra pillow. Text: What’s the biggest challenge? Right after, we see interview footage of Sarah again. Later, we see Sarah sitting in her bed with a large box of medication in front of her, taking some of her meds. Then we see images of Sarah sitting in nature, Sarah at her graduation. After this question, we see a comic-like effect of the same video of Sarah cuddling her zebra pillow, just a closer look at her face. Text: What should people understand? It fades into a real-life video and then to the same interview setting again. Before the last question, we see Sarah from the side with the same comic-like effect. She has her zebra pillow on her lap. It fades into a real-life video and then to the interview setting. Text: What’s your biggest dream? In the end, a black and white comic-like illustration of a text on Sarah’s bedroom wall fades into the colored text: Wish, hope, dream, and then make it happen. Then a black screen appears with text: Learn more about Ehlers-Danlos Syndrome: www.chronicpainpartners.com]

[@pick10tennisjacquelinebogg23]

Sarah is awesome!!

[@tellem372]

Hey 👋 I’m over here in Australia and relate to a lot of what you’re saying, with the misconceptions, the friends not coping etc…. This illness is HARD. But it doesn’t mean we don’t have dreams and goal. Then as well when you have a disability it’s like people expect you to sit in a wheelchair and stare at the wall!! Grr!
Please be encouraged and with healthcare (something I’ve thought about how to do in my country for awhile now and only just got more HOW), have a plan! Think about how healthcare needs to change in the US (and your state). Look at what other countries do (for all that is good in the world understand the Canadian, UK, NZ and Australian systems but don’t do them! Lots of other counties out there that are better). And formulate a plan!! Then you can speak to government and health insurers and all sorts of things 😊. It will take a team but awesome goal and I think you’re right at the point in history to potentially see something happen!!!
Stay well!! ❤ from the other side of the world!

[@Dulcimerist]

Thanks for sharing! I relate a lot to everything in the video.
I'm a male with EDS, and I wonder if males are less likely to talk about their experiences and issues with EDS, which is why they almost never appear in videos like these.

[@jercasgav]

There are a lot fewer males diagnosed with EDS than females. This is also pretty common in autoimmune disorders as well that more women get them than men. I have a theory that since women have more frail tissues in general due to the effects of estrogen and less testosterone that the threshold of having issues is reached sooner in women with EDS. Perhaps the genetics of women makes them predisposed too? But yes I would also surmise that males afflicted (although fewer of them have it), would also be more hesitant to talk about it.
I also would be curious to know if Marfan's syndrome occurs equally in males and females...it has so many similarities to EDS and is also a genetic connective tissue disorder?

[@jett8193]

Hi Sarah! My daughter (30s) & I (50s) are both Zebras. When we were diagnosed 7 & 8 years ago we were told this was very rare. Within the last year or two I've noticed more medical care folks of varying kinds (from GPs, spinal surgeons & PTs) are so much more aware of EDS now! So my dear, I can easily & gladly say, people ARE starting to talk about it more, yay! The more diagnoses, the less suffering! 🦓🖤🤍🖤