Managing a chronic health condition is often a full-time job. Still, for Valerie (valeriesvoice), a Texas resident living with a rare eye condition, it just became an exercise in frustration. She shares snippets of her life with Keratoglobus on Instagram and TikTok. After a recent health spiral, she made an appointment with a doctor but wanted to see him sooner than her October appointment. So, about three weeks ago, she called his clinic. In her post, Valerie noted that she wanted to see her specialist sooner than her scheduled follow-up in October. The doctor, she claimed, was “the Supreme” of his field, and he dictated her daily care that her local doctors carried out. Despite his importance to her care, the office didn’t cooperate. She described the situation, saying, “Doctor’s offices be like we’re gonna commit psychological warfare against you and then we’re gonna label you a problematic patient.” Valerie claimed that in this bureaucratic nightmare, she spoke with multiple office staff members, only to find herself in a loop of broken promises. She was allegedly told they would look into cancellations, but they left her waiting for days without a follow-up. When she finally received a call, it was to inform her that her existing October slot needed to be moved. She agreed. However, her appointment was then removed from her patient portal entirely. The need to escalate According to the American Academy of Ophthalmology’s eye-wiki, Valerie’s condition, keratoglobus, is characterized by globular protrusion of the cornea and diffuse thinning, which is most severe peripherally. It’s a serious situation that can lead to significant visual impairment and, in some cases, severe eye pain due to corneal hydrops or rupture. @valeriesvoice i filmed this on Wednesday. OF LAST WEEK. and i. still have not heard from person B or anyone else at the office wrote my doctor again on Friday begging for help and am also still waiting to hear back from that like guess i’ll just die??????????? #chronicillness #chronicallyill #spoonie #disabled #disability ♬ original sound – valerie Valerie describes her own experience with the condition quite vividly in a post. She noted that her cornea tore, or, as she prefers to describe it, it “partially exploded” because “tearing doesn’t capture the pain and overall chaos.” “I’m trying to be respectful of the fact that he has a very busy schedule,” Valerie said in the video about her attempts to reschedule. “I’m trying not to be difficult.” Despite her efforts to be accommodating, she was met with what she described as a major attitude from staff when she followed up. At one point, she was purportedly told, “Everyone is aware you wanna get in sooner. Okay. He doesn’t have anything.” This led to a heated exchange where Valerie realized she was being painted as the problem. She noted, “If y’all would have just said from the jump, it’s not happening, queen. I would have stopped calling you. But now I’m the crazy one.” The situation with the staff escalated to the point where she felt she had no choice but to message her doctor directly through his portal. She expressed her hesitation, saying, “This is like showing up to the king and asking him to help you with a scheduling issue, okay? Like, I did not wanna have to pull him in, but I have no choice at this point.” @valeriesvoice eyeball nation in shambles but for real thank yall for all of the love and kindness and support and also all of the funny comments i am making my way through them slowly and i see yall making ao3 authors note jokes and i am eating every single one of them up #chronicillness ♬ original sound – valerie She admitted that the doctor did respond and offered a date a month earlier. However, it didn’t align with her needs, and the confusion regarding her original October appointment persisted. At least it didn’t keep getting delayed and cause a larger issue. Of course, all we have to go on is Valerie’s claims, which can’t be verified. Despite that, the community was supportive of her frustration. An Instagrammer commented, “Advocating for yourself should never be considered ‘annoying’ or ‘difficult’.” Another added, “F**king so over doctors but I literally need them to survive. Medical neglect is REAL and most comes from the staff before you even see the doctor.” One TikToker noted, “TO BE CLEAR AT NO POINT WERE YOU BEING ANNOYING You were literally just following up when they didn’t follow through on the communication expectations THEY SET.” Two weeks later, Valerie provided an update. She told her community that she was finally able fix things. She alleged, “I am thrilled to announce that after legitimately two weeks, a half dozen phone calls, speaking to five different people, including multiple times an office manager who did not give a f**k, two direct messages to my doctor, as well as an additional email directly to his assistant, I was finally able to get the appointment that I already had and already made four months ago reinstated.” View this post on Instagram “So I am right back exactly where I started,” she lamented. “Just now down over a half dozen emails, speaking to five people, two weeks of trauma and tears, and wondering what the f**k is going on with the – Yeah. Mhm mhm. I love healthcare.”