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My Story: I have multiple sclerosis, but it doesn't define me

Multiple sclerosis progresses differently for every person and while some individuals suffer great difficulties, others have thriving work, romantic and social lives.

Anonymous

IN RECENT MONTHS, multiple sclerosis (MS) has been prominent in the news. I would like to begin by stating that I do not wish to take away from difficulties faced by Marie Fleming and the daily issues that plague Kate Tobin. I don’t want to associate this piece with the right to die debate; to me, that is a separate issue.

This article is anonymous – I do not want MS to be my label. I want to present a positive piece to change its perception. In addition to the recent portrayal of the condition in the media, MS and other disabilities can be seen onscreen as tragic, often with a wheelchair user seen as a helpless burden instead of a contributor to society; this is not an accurate account of life for most patients.

My first symptoms occurred in 2003. During my hospital stay, a team of doctors approached, drew the curtains with solemn, pitying faces. A nurse grasped my hand. The consultant gravely announced: “I’m very sorry, I’m afraid you have multiple sclerosis”. My first reactions were shock and devastation, the diagnosis was issued as if my life was over and I had no knowledge to the contrary. My first question was asked through tears, “Am I going to die?” Friends and family who arrived to console me were also distraught – none of us had any idea what was to happen or how this would affect me and my relationships in the future. That was my first experience of the negative perception of the condition and the catastrophic effect it can have on the newly diagnosed and their families. My subsequent neurological team and medical support have been second to none and are integral to my positive outlook.

Over 11 years I have had relapses. The first year was difficult as symptoms appeared shortly before my final exams. I completed my degree one year later and from then I decided MS would not take over my life. I am not understating the symptoms of MS. I have a weakness in both legs and I stumble and sometimes fall. I drop things and am generally clumsy. I used to dread telling potential romantic partners or employers of my illness in case they decided against the risk of someone with the perceived tragic future of MS. I now tell friends and colleagues that I have MS to challenge these views. The reaction is initially surprise with a sympathetic head tilt, followed by a pitying “I didn’t know…” Most have questions – for those unaffected by the illness, knowledge of how it actually affects people generally comes from the media. The perception is not of working mums and dads driving kids to school; successful people with full time jobs with active work and social lives.

In the years since my initial symptoms I have come across other people who are newly diagnosed. They and their families are terrified, apprehensive and sure their lives are over. They believe the media portrayal of MS – people see only wheelchairs, pain and a bedridden existence in their future. I reassure them that I have a thriving work, romantic and social life. While I do experience relapses and symptoms I do not let MS restrict my life. MS does not always mean you can’t run a marathon – look at Annette Fredskov who ran 365 marathons in 365 days! I may not want to run a marathon (I never liked running!) but that doesn’t mean I can’t.

Secondly I tell them that each person diagnosed with MS has a completely different pathway. The prognosis for MS patients is getting better and better, with new treatments and research every year. Many will not experience the suffering that others have undergone and someone diagnosed now has access to improved medication, support and treatment that just wasn’t there, even 11 years ago when I was first diagnosed.

I wrote this piece to give a positive perspective of someone living with MS. I believe it is the responsibility of the media, medical professionals and those with the disease to change perceptions by speaking out about MS instead of being embarrassed by symptoms and afraid of people’s reactions. The stress associated with the perception of MS carries a risk of self-fulfilling prophecy; stress can have a negative influence in any walk of life. The conclusion of a review of MS portrayal on television series accurately summarises the responsibility that should be assumed when portraying any illness. “Sound knowledge of how symptoms, diagnosis, and therapeutic options are presented in mass media is therefore indispensable for all who deal with MS patients, relatives, and caregivers”. The importance of the balanced presentation of positive aspects of the disease is crucial to promote optimism of those with MS, particularly those newly diagnosed with a misunderstood disease.

For further information visit: http://www.ms-society.ie/

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