Jacobo Santamarta Barral
When faced with a neuro-degenerative disease the diagnosis may look like the hardest part but it is not. You may feel bad at that moment but, even though you do not know what lies ahead, things are not going to get any better.
I was 22 years old when I got diagnosed and nothing would have lead me to expect how bad my situation could become. It was not until five years later that I started having some serious symptoms and I realised that they were just the beginning. I had finished a Masters Degree in Law and was ready to start what I believed was going to be an exciting work career.
That relapse kept me from doing anything at all for around a year. This made me understand that those symptoms were something I had to live with while trying to have a normal life- or rather, the life I was supposed to live.
So I got back on track, looking for a job; trying not to let my symptoms interfere with what I had prepared my whole life to do. For more than five years I developed my job the best I could but my situation got worse as time went by and eventually I had to retire. Knowing that I was not going to be able to work anymore was the worst part of all since I felt my life would lose its meaning.
It took me just a couple of months to realize, however, that maybe I was not meant to do what I thought. So I began to get involved into trying to make life easier for those in the same situation as myself; advocating for people who face such a devastating diagnosis.
To the outside world I had it all – a management degree, my own home, a brilliant family, a well-paid job I loved, a good group of friends and a beautiful girl I had just begun to see.
I had even found the strength of character and of mind to do the lonely hours of work to return to playing football after two ruptured cruciate ligaments in my right knee aged 16 and 20. I’d also had 60% of the cartilage in that same knee removed and still played League of Ireland for Dublin City. I had learned to work with and supervise people in 5-star resorts in Scotland and France and pubs in Dublin that held 900 people.
But, diagnosed with arthritis at 26, I was destroyed.
Depression is the most common comorbidity of MSDs and I live with it every day. When I owned it, it was the 10th diagnosis I had received alongside all the other systemic auto-immune conditions.
Forced to leave employment I became isolated, lost my self-confidence, my self-esteem, my financial security, my girlfriend, my friends and, for a time, hope. For two years I wallowed and grieved for everything I lost, took two years out of my life.
However, with support from my national and European networks I rebuilt myself. I had to retrain for jobs more suitable for a person with an MSD and I enjoyed being back in education. With a greater empathy and understanding of the world around me I became a better person.
I am now a better qualified, more rounded, more employable and better person than ever before. Unfortunately, the employers of Ireland and Europe view the large gap in my CV as a problem rather than the opportunity I’ve taken it to be.
I am ready, willing and capable of working. All I ask is for the opportunity to show that.