“I have hope because I know I’m not alone and that people do care. I have some amazing doctors who make me feel heard and respected.”
My life changed forever when I was 15 years old and developed a rare neurological disorder called idiopathic intracranial hypertension (IIH). Everything I’d ever known was ripped to shreds as my body battled with the effects of high cerebrospinal fluid pressure on my brain. This caused severe, relentless headaches, nausea, neck and body pain, and issues with balance/co-ordination/cognition - all largely unmanageable by any medications. My parents fought doctors for a diagnosis and validation of my suffering.
Hospitals services here in New Zealand seem to put young people over 15 into adult specialist services. For me, this made receiving a diagnosis harder, because IIH is even rarer in children and young people, and so these adult specialists had little experience seeing it in someone so young. I have also never presented as a ‘textbook case of IIH’, which is common for young people. I feel that my experience could have been a lot better had these services been delivered by paediatric specialist doctors (which would have been the case if I lived in Australia, the UK or the US) with a greater understanding of the complexities of dealing with this type of condition in a young person.
My parents spent a fortune on private doctors in an attempt to get treatment. After many horrendous experiences, by chance I was luckily connected with another person with my condition through social media. I was able to see her neurologist and finally get the surgical treatment I so desperately needed. These doctors were the ones who finally believed in me and respected MY experience of what I was dealing with. They were willing to treat my symptoms more aggressively and gave me some quality of life back.
Ten years on, treatments have not changed but I have hope that the way this condition is treated and diagnosed in future is changing. Although some specialist services are still so behind that I simply cannot get treatment or monitoring because they refuse to believe new research and diagnostic criteria updates. The value of organisations such as NZORD and their support in linking families and individuals with others living with the same condition can never be overvalued, as without the support and knowledge from others who had walked my path before me, I truly don’t know where I would be.
As I enter my sixth year of university, studying what should be a three year degree, and awaiting further brain surgery, the thing that keeps me going is the people I love and the people who I connect with who have my disorder and remind me I’m not alone or crazy. I have a dream of graduating university and being able to help people as a health professional, through combining the clinical skills from my study and what I have learned through my journey.
I have a crazy hope that one day New Zealand care would develop to where all patients are never invalidated or ignored. I hope one day young people with chronic illnesses are supported in a way that they can survive whatever is in their future. I want them to know they can still live their lives and complete school and university - but that it might just take a bit longer or look a bit different to the path that other young people might take.
The horrific experiences I had with awful medical professionals, and at boarding school (where my horrendous pain and suffering was invalidated, ignored and criticised by people who have no clue of what it’s like living this reality) only spurs me on to try and make a difference, however small that may be. I have hope because I know I’m not alone and that people do care, and because I have some amazing doctors who make me feel heard and respected, instead of simply being a number or condition.
|Condition||Idiopathic intracranial hypertension|
|Occurrence||1 in 100,000 adults – typically occurs in women of childbearing age; 1 in 200,000 children|
|Description||Affects the brain|