I’m Emma: a 28-year old, chronically ill boot of a woman who means business. In the month of September alone, I had six visits to Accident and Emergency and two hospital admissions. It was a time fraught with not being believed, having eyes rolled at me and even being told to “grin and bear it”. My experiences were a culmination of other truly rotten ones I’ve faced in my two years with chronic illness and that’s symptoms aside. I have chronic migraines, endometriosis and PCOS as well as gastric and ortho issues which are pending diagnosis. Here are three facts about me:
- I am hugely ill on a daily basis;
- I do not feel sorry for myself;
- I believe that people with chronic illnesses receive sub-par treatment and investigation into their pain.
With the latter in mind, I have decided to dedicate the rest of my life to making sure we are damn well heard. Sounds insane, right? I’m doing it anyway though.
This website isn’t all glitter and unicorns (what’s with everyone’s obsession?) but it IS going to be a hub of information and support on any chronic illness you can possibly think of as well as the issues surrounding them. I’m starting basic but believe me when I say I have huge plans. I want to become the “go-to” site for up-to-date, non-biased, varied research on chronic pain and plan on shouting until we’re heard. Your own submissions and participation on the discussion forum will help me hugely in fighting for our cause.
In the coming future, I see myself visiting universities to speak with nurses and doctors at the very beginning of their careers. They need to know the nitty gritty of the lives so many of us lead and how poor care and compassion can lead us down a terrible path with more pain and sadness. They need to know that an eye roll could be the straw that breaks the camel’s back. They need to know that they don’t know everything. They need to think outside the box and listen to the damn patient. Political representatives worldwide…I’m coming for you too.
*Please note that my research is often sourced from medical journals or “high brow” publications but at times, if a personal account of chronic illness is published in a “trashy” newspaper, I’ll still include it. The point of this site is to empower you as a patient and if a story strikes a chord with you, well then that’s all that matters. Occasionally, I’ll provide a link to an article that you’ll need to pay to read. I wish I had all the money in the world to pay this for you but I’m in the same boat as the rest of you. Again though, I’ll list the link if I feel it might help just one person who might be happy to pay if it’s exactly what they’ve been looking for. Research will be updated as and when I’m able to throughout the week. Keep in mind that sometimes I’ll just have my head in a basin watching Everybody Loves Raymond instead though.*