'It was soul destroying' - Irish engineer (45) who couldn't get work after she was diagnosed with a condition
"When I was diagnosed with multiple sclerosis (MS), no one wanted to hire me. I went from always having a job and working all over the world."
"I just kept applying and I kept getting rejected and rejected. It was very soul destroying."
Joan Jordan (45) was diagnosed with MS in 2010, after she became paralysed down one side of her body. It was feared that maybe she'd had a stroke, but a spinal tap confirmed that she had MS, a progressive disease that includes a range of debilitating symptoms including mobility problems, weakness and pain.
Some 9,000 people currently live with MS in Ireland.
"I'd stopped working a year before that because I didn't know what was wrong with me. I had a high pressure job, and I had two young children, and it was a bit too much," Joan tells Independent.ie.
But ultimately, she says, "the decision was made for me because I got sick. I always wanted to work and it was ripped from me. I worked really hard in school, I worked hard in college, I did computer science in Trinity and I was a software engineer."
As soon as she felt strong enough again, Joan started applying for jobs but found that noone wanted to employ her. She included mention of her illness on her CV.
"I have the relapse-remitting type of MS, I get relapses every so often, but I'm on a very good drug. I get fatigued and I limp. It took me a while to get on a good medication and go for a clinical trial."
Joan is now happily working 15 hours a week with Eupati, the European Patients’ Academy.
"I kept sending out my CV and I got no interviews whatsoever. I didn't want to not disclose my MS because it's part of me."
"Now I'm back working after eight years. It's awesome, I love it, and I got my pension back, which is awesome at my age."
The 45-year-old has written a book "huManS Multiple Sclerosis". She refers to it as "the book I wish I had been given when I got diagnosed with Multiple Sclerosis in 2010", and she's currently looking for a sponsor to help her print more copies. Currently she has 40 copies left out of her first print run of 500.
The book contains quotes and tips from people who have been living with MS for years.
To mark World MS Day yesterday, Joan spoke at Trinity College as MS Ireland launched a new report called 'Making Ireland the Best Place to do Multiple Sclerosis Research’, which they developed with Novartis.
The report aims to support researchers and provide people with MS and the public with a better understanding of the research process and ongoing research.
Some of the recommendations include the establishment of an MS Research Community, improved data and information sharing, greater involvement of people living with MS, potential funding models, and improved dissemination of research findings. The community will help overcome obstacles to research such as gathering samples, establishing a biobank and a patient register.