In a viral TikTok, a personal trainer says she had to request medical records to find out she has kidney disease. She is urging users to request and carefully review their own medical records.
TikTok user The Hypermobile CPT (@thehypermobilecpt) is a personal trainer and nutritionist who details her experience living with a number of chronic illnesses, including Ehlers-Danlos syndrome, which is a chronic illness affecting the body’s connective tissue. In the video, the TikToker is holding a stack of paper in her hand. “PLEASE GET YOUR MEDICAL RECORDS,” reads the text overlay.
“This is why it’s important to get your medical records, and to go through them,” The Hypermobile CPT says, holding back tears. “How is this the way I find out not only that I am resistant to heparin, which seems like very important information to know, but I’m at a significant risk of just randomly throwing a pulmonary embolism.”
She continues, “Not only that but this is how I find out that I am in stage two kidney disease. How is this fair in any way? And I hate to be that person crying, but like what the heck? How did not only the ER doctor, but the three different specialists who came in to see me when I was at the hospital, and my primary care doctor who these records were sent to, how did none of them tell me this?”
The creator reiterated in the video’s caption, “Please please please request your medical records and actually go through them because NO ONE TOLD ME THAT FOR YEARS MY KIDNEYS HAVE BEEN FAILING. I cant stress enough how much I hate the medical system at this point.”
@thehypermobilecpt Please please please request your medical records and actually go through them because NO ONE TOLD ME THAT FOR YEARS MY KIDNEYS HAVE BEEN FAILING. I cant stress enough how much I hate the medical system at this point. #pots #mcas #chronicillness #ehlersdanlos #ehlersdanlossyndromecheck #potssyndrome #hypermobileehlersdanlossyndrome #mastcellactivationsyndrome #spoonie #spooniesoftiktok #chronicpain #medicalgaslighting #patientadvocacy #thehypermobilecpt #livingwithachronicillness #medicalrecords #diagnosisjourney #vascularehlersdanlossyndrome #kidneydisease ♬ original sound – The Hypermobile CPT
The video has amassed more than 450,000 views since it was posted on Sept. 12. In the comments, users discussed their own distrust of the medical industry and expressed sympathy for the TikToker’s plight.
“I found out last year that I had a stroke in 2018 and a blood clot in my brain because I had to get my records and actually read them,” wrote one user.
“You have every right to grieve this betrayal,” someone else said.
A third wrote, “I found out I have [Polycystic Ovary Syndrome] n endometriosis from looking through my medical records..No one told me or my ma.”
One person claiming to be a registered nurse offered advice.
“It happened to me,” she said. “My advice is to speak up advocate for yourself, ask questions & write everything down, times dates, names. Sincerely an ER RN.”
The Daily Dot reached out to The Hypermobile CPT via TikTok direct message for further information.