Charlie's Story
Finding IIH Treatment Without Weight Loss
At 32, Charlie is a dedicated primary school teacher, who somehow finds the strength to guide young minds through the complexities of early education five days a week whilst maitaining a social life. They usually love their classroom, which is bright with student artwork and engaging educational displays. But lately, that classroom had become more of a battleground than a sanctuary, as Charlie struggles with Idiopathic Intracranial Hypertension (IIH) and the frustrating search for effective IIH treatment without weight loss demands from doctors.
It started with headaches. Not the ordinary kind that come and go, but ones that seemed to intensify first thing in the morning and were noticeably worse when lying down. Alongside these came unsettling visual disturbances – moments of double vision and sparkly patches at the edges of their sight. At first, Charlie attributed these symptoms to the natural consequences of teaching – the stress, the endless screen time, the constant demands on their attention. But as weeks turned into months, these symptoms got worse, and no amount of rest or fresh air and exercise seemed to alleviate them.
Charlie Faces the Medical System
After putting it off as long as possible, Charlie finally made an appointment with their GP. The decision hadn’t come easily. As a Fat person, Charlie knew that medical offices were rarely safe spaces. Their fears were quickly confirmed when the doctor, barely looking up from their computer screen, dismissed their concerns with minimal effort.
“It’s just migraines,” the GP concluded after a cursory conversation, with no proper examination or tests. “Reduce your stress. Take painkillers when you need to.” And then, almost inevitably, came the familiar pivot: the GP found a way to bring Charlie’s weight into the conversation, despite it having no established connection to migraines.
The Search for Answers
Feeling dismissed and no closer to understanding what was happening, Charlie did what many patients do after an unsatisfactory medical encounter – they turned to the internet. Typing their specific symptoms – “headache worse in morning, worse when lying down, double vision” – instantly led to information about Idiopathic Intracranial Hypertension (IIH). As Charlie read more, the puzzle pieces started fitting together. Not only did this condition matched their symptoms perfectly, but Charlie seemed to tick all the boxes when it came to risk factors too.
Armed with this knowledge, Charlie made another appointment, this time with a different GP. “I think I might have idiopathic intracranial hypertension,” Charlie ventured, only to be met with the predictable resistance of a medical professional unwilling to acknowledge a patient might have correctly identified their own condition. Nevertheless, this doctor agreed to refer Charlie to an ophthalmologist for further investigation.
After waiting three hours at the eye clinic, Charlie finally received confirmation: their optic discs were swollen, a tell-tale sign of IIH. This led to an immediate neurology referral, more waiting, and eventually, a lumbar puncture that confirmed what Charlie had suspected all along – the pressure of cerebrospinal fluid was abnormally high. Charlie had Idiopathic Intracranial Hypertension.
The Weight Blame Game
You might think a clear diagnosis would lead to clear treatment. But for Charlie, the diagnosis opened the door to a more insidious form of medical gaslighting. Sitting across from the neurologist, Charlie was informed with clinical detachment: “This is all because of your weight. If you weren’t fat, this wouldn’t have happened.”
No discussion of the condition’s poorly understood causes. No acknowledgment that the term “idiopathic” literally means the cause is unknown. Just weight blame, delivered with the certainty that only profound doctorly arrogance can muster.
The prescribed treatment? Weight loss, obviously. Not medication that could help manage the condition. Not information about how to cope with symptoms. Just “lose weight,” as if it were both simple and certain to be effective. Charlie was referred to a weight management program where they were advised to restrict their intake to 1200 calories daily. FYI, that’s less than what a toddler needs for healthy development.
Weight Loss Doesn't Work
Charlie complied, desperate for relief from the symptoms that were making teaching increasingly difficult. But while the weight temporarily came off, the symptoms didn’t improve significantly. If anything, Charlie began experiencing new problems like memory lapses, difficulty concentrating, weakness, and dizziness. And wouldn’t you know, these are all direct consequences of severe caloric restriction.
The mental health impact was even worse. Charlie’s relationship with food became increasingly disordered, and the shame of continued symptoms despite “doing everything right” created a deepening depression. When a particularly stressful period at work coincided with worsening symptoms, Charlie ended up in the emergency room, only to be berated by the same neurologist: “You haven’t been following medical advice. I told you to lose weight.”
The fact that Charlie had been restricting calories, had lost some weight, and was still suffering seemed irrelevant to the doctor entrenched in weight-centric thinking. When Charlie broke down in tears during the consultation – a moment of vulnerability they had desperately wanted to avoid – their doctor became even more irritated and dismissive. Rather than offering care or support or empathy, they doubled down and reinforced Charlie’s sense of being fundamentally broken and blamed for their own suffering.
Effective IIH Treatment Without Weight Loss
Imagine if they had encountered a neurologist who offered IIH treatment without weight loss prerequisites. They must exist somewhere, right? This doctor would have acknowledged from the beginning that IIH is idiopathic, so by definition, its cause is unknown. While it’s more common in fat, pre-menopausal people, correlation doesn’t equal causation, and weight loss has never been shown to improve the condition in the long term.
Instead of focusing exclusively on weight loss, this doctor would have prioritized medical interventions like acetazolamide, a medication that can help reduce cerebrospinal fluid production. They would have acknowledged the harm caused by previous weight-centric care and developed a management plan focused on medication, symptom monitoring, and quality of life.
With this approach, Charlie’s symptoms might have stabilized, allowing them to rebuild their relationship with food, movement, and healthcare professionals. Life wouldn’t have become perfect overnight because IIH is a challenging condition regardless of how it’s treated. But at least Charlie would have been spared the additional burden of weight stigma and self-blame.
Why IIH Treatment Without Weight Loss Is Necessary
Charlie’s story illustrates a profound failure in our healthcare system—the tendency to blame weight for conditions that are explicitly labeled as having “unknown causes.” This denial of proper IIH treatment without weight loss requirements leads to:
- Medical gaslighting when patients report adherence to recommended diets but continue experiencing symptoms
- Delayed access to effective medications while doctors fixate on weight loss
- Harmful caloric restriction that creates new health problems
- Accumulated trauma from being blamed for a condition that isn’t their fault
- Deteriorating mental health as patients internalize weight stigma
- Dangerous delays in care when symptoms worsen but patients fear further blame
The single study most often cited to support weight loss for IIH involved just 25 women on a starvation diet of 425 calories daily for three months, with a 20% dropout rate and only a 10% reduction in headache severity. This flimsy evidence is the foundation upon which countless patients are denied proper IIH treatment without weight loss requirements. Instead of receiving evidence-based medication, they’re prescribed dangerous caloric restriction that often creates additional health problems.
Proper IIH Treatment Without Weight Loss Looks Like...
- Respecting the “idiopathic” in IIH—acknowledging we don’t know the exact cause
- Prescribing medications like acetazolamide as first-line treatment
- Monitoring symptoms without blaming the patient when they persist
- Providing supportive care for both physical and psychological aspects of living with a chronic condition
- Distinguishing between correlation and causation in discussions of weight and health
- Creating treatment plans that address the actual condition rather than fixating on body size
- Acknowledging and addressing medical trauma from previous weight-stigmatizing encounters
Where To Next?
For too long, fat patients with conditions like IIH have been caught in a healthcare system that prioritizes weight loss over actual evidence-based treatment. But there’s a better way. By advocating for IIH treatment without weight loss requirements, we can create a healthcare environment where all patients receive appropriate treatment, regardless of their size.
This is why I’m currently writing a book where I dive deeper into these transformative weight-inclusive approaches to patient care. And I want you to be a part of the process. IIH is featured in Chapter 4, which is ready for your perusal. Check out No Weigh for more information.
If you’re struggling with IIH and tired of having your symptoms blamed on your weight, know that you’re not alone. Join our community in The Weighting Room, where you’ll find support, resources, and healthcare professionals who understand. Additionally, you can book a consultation with me.
Want to learn more about effective IIH treatment without weight loss requirements? Check out my comprehensive on-demand masterclass, where we dive deep into the science of IIH and explore evidence-based strategies for managing it—no weight loss required.
