For those who don’t know, I’ve been in the hospital for the past few days battling severe migraines, light sensitivity, dizziness, and nausea—all symptoms tied to my ongoing struggle with Idiopathic Intracranial Hypertension (IIH), a rare and chronic brain condition I was diagnosed with last year (read more about that here). This condition often mimics the symptoms of a brain tumor (though I have neither), causing excessive cerebral spinal fluid (CSF) buildup around the brain and spine. This excess fluid increases intracranial pressure, which leads to horrendous migraines, vision issues, brain fog, and a host of other debilitating symptoms.
But the real story here isn’t just about my diagnosis—it’s about how I had to advocate for myself to get the right diagnosis and care. It’s about medical gaslighting and how those of us with chronic conditions are often dismissed or misunderstood by healthcare providers. It’s about the immense need for self-advocacy in chronic illness.
The Struggle with Misdiagnoses and Medical Gaslighting
If you’ve ever been told your symptoms are “all in your head” or that you’re just overreacting, you understand the frustration of medical gaslighting. I’ve experienced this firsthand. Most recently, it took three different hospital visits to get the help I was seeking. Doctors dismissed my migraines, light sensitivity, and dizziness as “just headaches” or stress-related symptoms. Some even suggested that I was exaggerating the severity of my condition.
When I was hospitalized recently due to an intense migraine that lasted 12 days, the doctors initially diagnosed it as viral meningitis and/or encephalitis, especially after detecting the HHV-6A virus in my spinal fluid. For those unfamiliar, HHV-6A is a virus that lies dormant in most people’s bodies after childhood but can flare up under certain conditions.
However, an infectious disease specialist reviewed my entire medical profile, full of tests, including MRIs, an echocardiogram, and a lumbar puncture, it became clear that the issue wasn’t a viral infection at all—it was a flare-up of my Idiopathic Intracranial Hypertension (IIH), likely triggered by a combination of high stress and barometric pressure shifts.
The frustrating part? It took three hospitals for anyone to take me seriously. It wasn’t until I advocated for myself, voiced my concerns, and walked out of disrespectful and dismissive emergency rooms that I was able to get the proper treatment and an accurate diagnosis.
Why Self-Advocacy Is Essential in Chronic Illness
Living with a chronic illness like IIH can often feel like you’re navigating a maze of misdiagnoses, dismissive doctors, and medical gaslighting. Unfortunately, this is the reality for many of us with rare and complex conditions. Doctors may not always have the answers, and sometimes, their assumptions can lead to delays in diagnosis and treatment.
This is why self-advocacy is so important. No one knows your body and your symptoms better than you do. When I started experiencing new symptoms, I wasn’t afraid to question the doctors and push for further testing. I knew my condition well enough to recognize when something wasn’t right, and I trusted my instincts to insist on the right care.
Whether it’s asking for a second opinion, pushing for more testing, or simply speaking up when you feel your concerns aren’t being heard, advocating for yourself is a crucial step in managing a chronic illness.
My Recent Hospitalization: Navigating the Healthcare System
During my recent hospitalization, I had a full spectrum of tests—MRI scans, lumbar punctures, echocardiograms, and countless blood draws. I am still undergoing testing to rule out a CSF leak, which could complicate my condition even further. Despite the uncertainty, I have made it a priority to keep advocating for myself.
While in the hospital, when I was in pain or experiencing worsening symptoms, I told the doctors exactly what I was feeling. I explained that certain treatments weren’t working and asked for adjustments. I requested more clarity on the diagnoses and pushed for answers regarding my dizziness, nausea, and brain fog, which had been unbearable.
I’m grateful that my persistence paid off, and we were able to rule out other serious conditions. With a proper diagnosis and treatment plan now in place, my care team is focused on managing the IIH flare-up and helping me regain my health.
Healing from Chronic Illness: Managing IIH and Other Symptoms
Now that I’m back home and focusing on recovery, I’m working closely with my medical team to reduce the pressure in my brain and spine. My treatment plan includes medications to manage the symptoms of IIH, as well as additional testing for potential conditions like Postural Orthostatic Tachycardia Syndrome (POTS), which is common in people with IIH.
The road to recovery isn’t easy, but I’m committed to following my treatment plan and reducing stress in my life—a critical factor in managing chronic illness. I’ve learned that healing takes time, and it’s important to be patient with myself.
Three Key Takeaways for Advocating for Your Health
As I continue my recovery, I want to share three key takeaways for anyone navigating the complexities of chronic illness and the healthcare system:
- Trust Your Instincts: If something doesn’t feel right in your body, speak up. Don’t let doctors dismiss your symptoms or make you feel like you’re overreacting.
- Be Persistent: If your symptoms aren’t improving or you’re not getting answers, keep advocating for yourself. Request second opinions, more testing, and a deeper look at your condition.
- Leverage Your Support System: You don’t have to do this alone. Reach out to loved ones and other people with similar conditions for guidance and support. Having an advocate by your side—whether it’s a family member, a friend, or a fellow patient—can help you navigate medical appointments and decisions.
The Road Ahead: Gratitude and Moving Forward
I’m so thankful for everyone who’s supported me during this time—whether it’s through texts, prayers, or simply thinking of me. Your encouragement and love have meant the world. As I continue to heal and move forward, I remain hopeful that I can manage my IIH more effectively and live a life beyond my chronic illness.
To those of you dealing with chronic conditions like IIH, migraines, or other rare diseases: I see you. I know how frustrating and exhausting it can be to fight for your health in a system that often doesn’t understand what you’re going through. But remember, self-advocacy is not just your right—it’s your most powerful tool.
Thank you again for all the love and support. I’ll keep you updated on my journey to healing. 💛💜
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