Rachel Horne wrote a guest post on 15 July called Identity. I think just about everyone who has had MS will have gone through at least one personal crisis and hopefully come out the other end. This is my personal crisis story or losing and regaining my identity and written with the benefit of hindsight.
I was diagnosed in 1995 with RRMS. In those days the mobile phone was similar to a breezeblock and the Internet did not exist. After the consultant bluntly told me and several trainees of my diagnosis I had to go home and look up multiple sclerosis in the Encyclopaedia Britannica. The entry was devoid of detail and meant nothing to me. I was diagnosed because of double vision which was there one day and gone the next.
My MS was not life-threatening in any form or fashion so life continued exactly the same as pre diagnosis. It morphed into SPMS in 2000. Little things in my life now changed but I was still working so I remained in a state of happy denial. In my mind I did not link these life-style changes to multiple sclerosis.
In 1997 I started a new job, a specialist computer contractor and was in fairly continuous employment usually working overseas. The occasional six or nine month break between contracts was stressful but I coped.
My life was turned upside down
On Monday, 9 January 2012 I went for an interview for a new contract in London. I returned home and told The Wife that my days of working as an IT contractor were over. Quite simply I no longer had the energy to commute into London and work for 5 consecutive days. The only option I could see was medical retirement. Incidentally I was not offered the contract.
Up until then I had a set of rules or red lines that defined my life; this was my identity. On that day Multiple Sclerosis changed my life in a very visible and permanent way. As an international computer contractor my job was binary; either I worked a five day week or did not work, a four-day week was not an option. Who was now going to employ an ex-computer contractor suffering from advanced MS? I looked around and there was no suitable work for me.
By taking that decision
Now I was at home 24 x 7. My working clothes or uniform took up permanent residence in my wardrobe. I had worked away from home every week for the last 15 years. Now The Wife’s friends were my only friends.
I felt isolated
Now I was on the ‘rock n roll’. Suddenly I had no identity. I had no self-esteem and felt valueless. I had no idea of how to fill my time, what I should be doing, where to turn for help or who would understand my problems. I felt worthless, these are emotions frequently associated with unemployment.
Now add advanced multiple sclerosis that was slowly but inevitably getting worse. In order to survive I had to change the rules I used to live my life. I needed new reasons to get up in the morning, find people to engage with and learn to adapt my life in order to accommodate advanced MS.
Looking back I can see that I needed a new identity or set up new rules to lead my life.
A lucky break
In August 2012 I was asked to give a 30 minute talk on my diagnosis of MS to a group of people from a pharmaceutical company. To my surprise and relief I enjoyed doing it. As so often happens in this world work creates more opportunities. I now do this several times a year but I now talk about living with a disability.
I give talks to trainee nurses at universities in and around London, I talk about the lived experience of living with a Long Term Conditions. Surprise, surprise further opportunities have followed on from this.
I was also introduced to someone who created a WordPress website for me; you might know it, Aid4Disabled.com. My early articles were truly atrocious. In fact I had no idea what I was doing. Over time I learned how to run the website, use social media and write blogs. In fact I am still learning and it provides me with an outlet so I can deal with my MS and live with my MS.
I was starting to give myself a new identity.
Move forward to today
I now have a new life which I enjoy. I have given myself a new identity. Equally important I have given myself a new set of rules that allow me to get the most out of life.
Basically I cannot walk unaided, not allowed to drive and must keep out of the heat. I have a funky mobility scooter, love travelling by train or plane. I really enjoy my new me.
Life has definitely changed for the better since I took medical retirement. Eventually I found a new identity but this only happened because I was determined not to let MS rule my life. My life now has a value and a sense of worth. I live by a different set of rules but my character has not changed.
Nowadays people contact me and ask me to work with them I feel a genuine sense of achievement. I am wanted and I have a value.
CoI – non
By Patrick Burke
Patrick was diagnosed with RRMS in 1995 but believes his symptoms started in 1972. The disease turned into SPMS in about 1999/2000. He was forced to take medical retirement in 2012 and set up the website Aid4Disabled in the same year. The website is the story of his MS since retirement and it describes a wide range of objects that are readily available for people with physical disabilities to improve their quality of life. Patrick is also a member of the Barts MS Advisory Group.