Meningitis in your words

Sarah 's story

  • Date of illness: 01 Aug 2016
  • Categories: Group W meningococcal (Men W)
  • Age: Adult 25-59
  • Outcome: Recovery with after effects
  • After effects: Other
Sarah
In August 2016, at age 30, I had reached the peak of my career. I landed my dream job travelling around Australia for work in aged care. I was happy. I was independent.

But my life was turned upside down in a matter of hours.

When tragedy struck I thought I only had a bad bout of the flu, but when my condition rapidly worsened, I was taken to hospital. It took meningococcal disease 12 hours to take hold of my body and shut it down.

After doctors carried out a lumbar puncture, I looked at my legs and the rash began to appear. I knew I was in trouble, and the look on my mother’s face is something I will never forget. I was placed in an induced coma as that was my only chance at possibly surviving, and I was on life support for 8 days.

Doctors confirmed that I had meningococcal disease, the deadly W strain that can kill within hours. During this time my family were told I wasn’t expected to survive and were told to say good bye to me multiple times. After 8 days I surprised everyone by waking up. I was in ICU for 60 days and have spent the majority of the last 18 months in hospital.

I soon realised just how much strength I needed and had no choice but to fight. I had several fingers and toes amputated, experienced the loss of four major organs – my gallbladder, spleen, large bowel (leaving me with an ileostomy), and I now require a kidney transplant. I have had over 20 operations in less than 2 years and have been back on life support 4 times. I literally had to rebuild my body and continue to do so. Until I receive a kidney transplant, I am dependent on dialysis three times a week to survive. I needed to learn to walk again and I lost 20kgs leaving me at a weight of 43kgs. A feeding tube was inserted multiple times. My heart failed to only 15% function, my lungs filled with 3 litres of fluid, psoriatic arthritis has ravaged my body and to this day my organs are still affected. My pancreas and liver are now affected and this causes lots of pain and problems.

Yes, I used to think I had done something wrong: “am I being punished for something?” or “what did I do to deserve this?”. As the hits continue to keep coming, I now know this horrid thing called meningococcal disease didn’t kill me for a reason - although it continues to try even 18 months on! The reason being, to help stop this from happening to other people. To potentially save lives. To use my strength and willpower to fight and show others what this disease can do to you.

You don’t know how strong you are until being strong is your only choice.

My life has completely changed. All from meningococcal disease. And I still face daily challenges.

I am now a proud public speaker and share my story and information about meningococcal disease. In addition to this, I aspire to help and motivate others who are facing challenges they have no control over. I advocate and share my story in the hope of helping other people and preventing this from happening to others.

You can follow Sarah on Facebook or Instagram - @iamsarahjoyce_ for regular updates. Sarah also recently created The Sarah Joyce Project, raising awareness of meningococcal disease.

Share the story