Seeing red after reading "How Having a Disability Became Cool"
Has anybody read this article, "How Having a Disability Became Cool" https://www.telegraph.co.uk/news/2026/09/05/disability-became-cool/? We've been seriously seeing red here at SHN since it came out.
The article focuses a lot on POTS, postural orthostatic tachycardia syndrome, a condition close to my heart because I live with it! Because it mostly affects young women, it's so casually dismissed as anxiety, depression, or sometimes doctors just call it "laziness." I'm sure that sounds very familiar you as a member of SHN.com! (Meanwhile, all I want is to live a normal life without seeing stars if I forget to wear my not-cute compression socks! Doesn't sound very "cool" to me...)
We know that ALL of you here at SHN.com so vulnerably and openly share your struggles online. And in doing so, you've created huge, robust communities of people who now better understand their symptoms & more confidently speak up at doctor's offices. Many of you wouldn't even HAVE diagnoses were it not for others sharing about their illnesses online. You'd still be in the doctor's dismissals pile of "faking it," or "just anxiety." And precisely BECAUSE of online "sickfluencers" (we call them Health Leaders!) you're now able to GET a diagnosis, find qualified healthcare providers, create a treatment plan, and live your life more confidently.
So if you could say anything to the author of "How Having a Disability Became Cool," what would you say? We want to compile all of your responses and write our own article about how integral Health Leaders really are, how they're changing people's lives every single day, and how they are the pillars of a medical system that so often fails those who come to it seeking help, only to receive dismissal and judgment.
Sound off below! 👂
sharing this with other get better solution in community
Totally agree. It's people speaking out that brings awareness and improvement! , thank you for sharing and helping grow the community! - Warmly, Donna (Team Member)
That article, in addition to a few others, including the one scolding women for using canes (https://www.thetimes.com/comment/columnists/article/young-women-walking-sticks-gen-z-disability-2ssv95mws), has me livid. It took me 30 years to be diagnosed with endometriosis, and articles and attitudes like these cause so much harm: the burden of being told you're being dramatic when the debilitating pain you live with is very real. It takes a tremendous toll on one's mental health. And it adds to the fact that the conditions that women live with are under-researched and misunderstood by the medical community. New studies prove that endometriosis is so much more than "a menstrual disease," rather, they're systemic inflammatory conditions that are highly likely to come with other chronic conditions. I could go on for an hour about my feelings about these articles, and the anti-disability rhetoric that's been plaguing the media lately. It also is a direct disinformation campaign trying to discredit people with Long COVID, which I was diagnosed with this year after 4 years of test after test after test. I need a cane now, and it's for no one to judge! (Matter of fact, I'm writing up my own articles about this at the moment for my blog and podcast!) Also,
-- just wanted to share some more good news about writing! I just heard back from the Beryl Institute's Patient Experience Journal -- they accepted my paper for publication! It'll be in their November issue. Between this and the menopause series I wrote for you a while back, it's been busy, and I'm so happy that my advocacy work has been taking off so well lately! 😀 Absolutely! I just approved the preprint copy this morning and will be sharing widely once published. 😀
The patient advocacy movement has been vital for me to get the help I needed. If I hadn't connected with others online, I wouldn't have found Dysautnomia International, which had a conversation guide to bring to appointments. That's what sped up the approval for me to have the test to get diagnosed. Not only do we help each other with resources, but the supportive community is amazing!
And that's another thing that annoyed me about the "sickfluencer" article. It's so hard for people to get SSDI, and despite employment equity statements, it's hard for a lot disabled people to hold steady jobs, so they turn to freelancing and building their own influencer platforms. So no matter what they do, they're accused of faking to get "free money" or "shilling for brands" online. It's like the Ugly Laws all over again, where people would just rather not be aware that disabled people exist at all. And the last of the Ugly Laws were repealed in my lifetime--just in the 1970s! It's not some far-distant thing like people assume.YES!! I've had so many of my community members be treated like criminals for trying to access SSDI - having to be basically put on trial. "So no matter what they do, they're accused of faking to get 'free money' or 'shilling for brands' online." - EXACTLY this!!
There is NOTHING cool about hurting all day long--the pain, the stiffness... there is absolutely nothing cool about exhaustion/fatigue 24/7 no matter how much you TRY to rest and relax. Try resting and relaxing in pain! Oh, thats so cool right??
How about using bathroom 🚻 to do #1 and you end up having an accident on yourself. A trail of urine on the floor to show every step you taken to get to the bathroom. The fun part... wait for it!! So how about NOT being able to do #2 and whats cooler is the urgency!! So exciting I know!! Try rushing to the toilet with balance/gait/walking issues. Oh thats quite the adventure right there! If you ever need a great laugh... Youre very welcome 😁.
I just know you will love this, the best Im sure of! Youre talking and you say the wrong word that you were supposed to say or better yet, you cant recall the word at all. As if these are foreign words you have never said before. What a roller-coaster ride when your cool mind cant recall!
Youre getting ready for the day, you have just put on your deodorant for instance and just that quick you apply it again because you've forgotten if you did or not. Whew!! Yup, you guessed it!! COOL 😎!
Im sure I have lots more examples, if I can recall them at this moment.
Signing off for now, I may need to use the bathroom...
The coolest MSer ever 😎 ☮️youre so very welcome. I share my struggles with anyone pretty much anywhere if they ask. This is how we can help strengthen each other and be supportive. My pain isnt just mine, it may be another's unspoken truth. , This is true. Sharing our challenges can be so important to growing community. - Warmly, Donna (Team Member)
