Challenging Perceptions: The Unseen Struggle of Living with IIH #RareDiseaseDay -

*I will preface by saying this is not my typical “MrsGeekChic” blog post, it’s more personal but I thought it was important to share.

Today is Rare Disease Day, a day to raise awareness and advocacy for rare diseases that impact millions of people worldwide. One such rare disease is Idiopathic Intracranial Hypertension (IIH), a condition that I was diagnosed with in 2021. This diagnosis has changed my life in many ways, and I’d like to share my experience living with IIH in the hopes of raising awareness about this condition.

IIH is a condition where the pressure inside the skull is elevated, leading to debilitating headaches that aren’t manageable with OTC medications, visual disturbances, pulsatile tinnitus, and other symptoms. It is most commonly diagnosed in women of childbearing age, and its cause is unknown, hence the name “idiopathic.” While it is a rare disease, its incidence is increasing, and there is still much that is unknown about it. I was diagnosed via lumbar puncture (spinal tap) in September 2021.

Living with IIH has been a challenging experience for me. The headaches were constant (sometimes lasting weeks), and they are unmanageable by any medication. I have tried many different medications since 2021, and while some have helped with pain management, they have also had negative side effects, such as cognitive impairment. As a result, I’m not as “on top” of things as I used to be, which has been a difficult adjustment for my type-A personality. This has been a significant change for someone like me, who has always been highly involved in everything I do. I have had to learn to prioritize self-care and pacing myself, which has been challenging in a culture that values productivity and achievement above all else.

Larissa wearing her black ice hat and giving a peace sign.

Wearing an ice hat has become a new trend…!

One of the most challenging aspects of living with IIH is the lack of visibility of the condition. People can rarely see that I’m suffering, and they still expect me to be my bubbly, fun-loving, and creative self. It can be challenging to explain to others why I can’t do everything I used to do or why I need to cancel plans at the last minute. It’s a hidden disability, and it can be isolating.
My passion for educational technologies has also been impacted by my IIH diagnosis. I’ve had to distance myself from many of the EdTech communities I used to be involved in because I’m afraid I can’t keep up anymore. I’ve let my blog grow virtual cobwebs, and I’ve missed meetings and calls for fear that I’d blank out, forget words (due to medication side effects), or have little to contribute.

Living with IIH has put a strain on my mental health, my relationships, and my work. But I’m one of the lucky ones. I don’t have to worry about losing my eyesight, which is one of the main concerns with IIH. I’m fortunate that I can manage to work every day, but many people with IIH can’t.

Living with IIH has been a life-changing experience for me and it is getting more difficult for me to “smile through it” and “pretend everything is fine”, so I thought today would be the perfect day to share my story with the world! It’s a rare disease that not many people know about, and it can be a challenging condition to live with. However, I am so grateful for the support of my loved ones, close friends, and the healthcare team who have helped me manage the symptoms, and my mental health and remind me to always look on the bright side. I hope that by sharing my experience, I can raise awareness and advocacy for IIH and other rare diseases. And to those living with a rare disease, please know that you are not alone.