A Time For Change

By Hayley Dale

I was diagnosed with Fibromyalgia at fifteen. A Polycystic Ovary Syndrome (PCOS) diagnosis soon followed at eighteen and by twenty-one I had developed Osteoarthritis in my knees. Fifteen, eighteen and twenty-one are significant milestones in anyone’s life, and this is what I was faced with. At twenty-three I was diagnosed with Idiopathic Intracranial Hypertension only to have an autoimmune disease by twenty-six. I have lived with chronic pain since I was fifteen years old.

I am now married; I care for the elderly five mornings a week and raise my son who is on the spectrum for autism. All of this is managed while suffering through debilitating pain each day.

Without access to adequate pain relief my quality of life is non-existent.

Without pain medication I find myself unable to work thirteen hours a week, I cannot care for myself, my home or my son in the way I would like. Things most take for granted, things like washing my hair is something I manage once a week at most. The movement is so painful and exhausting! I cannot cook food in the oven or hang the washing out, again tasks others complete with ease.

I wake multiple times a night due to the excruciating pain.

I have seen so many doctors who have referred me to pain specialists only to be told I “need to learn to live like this,” or that “external factors, such as my son having autism, are contributing to my pain.”

I want to be able to get onto the floor and play with my son, so being fed information such as this is far from helpful! Unfortunately I am unable to control his meltdowns or my own flares – teaching myself to avoid these external factors is absolutely impossible. At this stage I am still left with nothing other than psychology appointments to manage my pain - this needs to change.

I want to see changes within the healthcare system, where a team of healthcare professionals actually listen to their patients, validate their journeys and support them.

Though I do not want to live on opioids, having the option of being allowed access to this pain relief would definitely help on the days I am having a major flare. As I cannot, I have booked in a weight loss surgery for the following year as a desperate measure to help with the pain.

I just want someone to hear my cries, understanding that this is not all in my head. This is very real for me and it is affecting every area of my life, my husband’s life and my son.