I am 16: an age to be young and find your first breath of freedom. This is also the age that I was diagnosed with diabetes. But, it’s not all bad. Initially the fear of having an illness that would expand a lifetime catapulted me into a new world where hospital visits became the norm, blood tests became routine everyday activities, and over-protective parents looked on.
It’s not the illness that is tiring. Chronic illnesses are invisible but their management is less so. The doctors and nurses always spoke to my parents but they did also take time to talk to me. Although I had the support I needed it was extremely difficult to become an empowered patient.
As a very aware young person, a health activist of many years, being empowered and asking the all-important question about seeking a better treatment option for my own health, felt like I was asking for a Gucci handbag from an H&M store. When you’re a patient, you don’t just take control of your own health, you begin to factor in other patients lives and needs.
Regardless of all these thoughts, the fact still remains that you are a patient and you deserve a slightly more personalised service. You do deserve the right to feel like you can take control of your new health problem and learn to adapt, live and develop as a normal individual.
You deserve not to be worried about your future because you can’t seem to manage this ‘minuscule’ problem in society’s eyes that you know is enormous. After almost a year and a half of this internal struggle to request a better treatment, I made the stand. It was coming close to that awful transition period between paediatrics and adult healthcare.
Despite meeting the criteria and having a clinical need for the newer treatment option (in my case an insulin pump), you have to be ready to battle every question you are asked about why you need it. It’s not a simple conversation between a doctor and patient, it can turn into a court room where you are the innocent being proved guilty.
Although there was resistance in my case from one doctor, I did not accept defeat. I fought to secure recognition of my changing needs and that is what every patient must do. In order to obtain what you need, you need to think like a politician or a lawyer; you will need an answer for every question. Be persistent. Be determined. Be, if necessary, a nuisance because only perseverance will secure success.
