Have you ever seen your rare disease represented in the media?
How did it make you feel? Did you feel it was an accurate depiction? Tell us more about what you would like to see and what effect you hope it would have on viewers.
A few of mine I have seen in various media, others nothing. There is more awareness on social media than usually elsewhere. Sometimes, I find videos on YouTube or specific condition organizations as well. It's much easier now to connect than it used to be. It's easier to find information, support groups as well.
I have had late diagnosis for multiple conditions , I set later in life a few more. Lots of comorbities as well.
I do spot on TV shows, movies, or books when they feature someone with one of the conditions I have. My brother and I are watching shows like " House" and okay a spot my condition. The more common conditions show up more frequently. A few haven't at all so far. More celebrities are also sharing their conditions as well.
I am glad there is more information available now as I went decades before doctors finally figured out several that are primary (born with). It wasn't me having anxiety unless the stress of being dismissed or even threatened I might need inpatient care and a mental health evaluation if I didn't stop asking questions and worrying about my health.". I have some PTSD from that. I have to print out symptoms, concerns, questions, and updated medications and such because I stress too much and can't remember to mention or recall it. There are a few doctors I do well with, others I stress at.
It doesn't help so e don't believe in some conditions as being a " real thing", doctors having outdated or mixing up conditions and symptoms. Some have personal opinions on what is it isn't a condition, treatment, and won't refer you to specialist, block medications, etc.
It's much easier now than even a decade ago, except fighting insurance companies and if you need specialty care, tests, and medications. Awareness in the media helps. Patients banding together, and fighting for change helps. Not being alone matters so much.
Just being able to tell people I wasn't a hyperchrondriac, or faking something, being lazy, or just trying to get out of something. I can't take the generic markers either.
I am usually checking for misinformation though on shows and such as they used to give the wrong or mix conditions up. It's better now than it used to be. They know people will look up stuff or complain on social media fast., I am glad you are seeing growing respresentation and support for your health conditions in media and on social media. My husband liked House and back in the day, we liked how they would pull out the most rare and random conditions each episode. I can't say how accurate their representation was, but, at least they were bringing awareness to some rarer conditions.
Some of my family has health issues and I hear you about "fact checking" tv shows and the like when they get it wrong.
And, for all the nad that can come with social media, I do love that it's made it so much easier to find information, support, hope, and COMMUNITY when living with a rare condition. That's such a great gift to all of us!
Thanks for joining the conversation on this topic!
Best, Erin, Team Member.
In the movie Love, Weddings & Other Disasters from 2020 Diane Keaton played a blind woman due to neuromyelitis optica which is the disease I have. I'm not blind but it was cool to see the rare disease acknowledged like that. Also, in 2012 Master Chef's winner was blind from NMO and she's gone on to be quite a successful chef. I didn’t have the disease then but watched that season and she was really impressive. Sucks to have NMO but I'm blessed with my eye sight and I'm ok for the most part. God is good!
, great! I didn't know that, so apologies for giving you information you already knew.
Best, Erin, Team Member.no worries. I appreciate that you tried to help me. Thanks!
I am short bowel syndrome and I don’t think I’ve ever seen it advertised anywhere
, I bet you're right. I do wonder if any of the bajillion medical shows on TV have ever had an episode about short bowel syndrome. Remember the show "House", where almost every case was solved by the eccentric, acerbic Dr. House and the patients always had some really rare condition or incredibly rare complication/presentation? Maybe that show touched on it. Still, I know representation can be misleading, especially on those medical dramas.
Best, Erin, Team Member.
I have Anderson tawil syndrome with hypokalemic periodic paralysis. Very recently I saw a medical drama that featured someone with my case. It was powerful to see someone with our condition represented finally because it is very, very rare, it was also a little bit funny to see a diagnosis wrapped up in less than an hour if only it worked like that for all of us. But I thought they did an excellent job representing the disease itself and how it could have been missed.
, that is awesome! Feeling represented is very validating! I'm glad to hear thaty did a good job of representing how it presents. And the fact that they choose to cover a rare disease, it brings (hopefully) a light to the struggles rare warriors suffer in trying to understand what is happening. Thank you for sharing that! - Warmly, Donna (Team Member)
