It’s not about scraping through, it’s not about being just half of who or what you ever thought you’d be as a person. Nonetheless, it’s about rising above pessimism, difficult situations and learning how to be happy in a world full of new normals.
When I was diagnosed in 2005, I felt a burning need to help others in the same kind of situation I found myself in by informing them what MS is, what it feels like and how others can help.
Living in a different country, having to learn about the often difficult Irish healthcare system, creating and sticking to medication schedules and trying to remember hospital appointments, all happened in a blur at times. Looking back now, I wonder how I ever managed. To my surprise I learned in no time, simply because there was no other way I could accomplish what I set out to do before my diagnosis: rise the corporate ladder and enjoy life while doing it.
True, I was diagnosed with relapsing/remitting MS, the second less evil brother of the four types of MS, which means that attacks or exacerbations would come and go in a wave of strong or new symptoms, before returning with new or worsened symptoms. At this stage in my life, it’s hard to see any remission on the horizon, but it could have been much worse, like being diagnosed with progressive MS or ALS as part of Motor Neurone Disease. It could have been a brain tumour, damage in the brain or spinal cord, or even a genetic disorder. Subsequently, yes… it could have been much worse.
Being realistic though, every type of MS is still a chronic illness that cannot be cured. Its other names are ‘disseminated sclerosis’ or ‘encephalomyelitis disseminate’. It’s still a neurodegenerative illness as well, as the neurological system breaks down as time goes on. You may not see it, but degeneration is there, and it is happening as we speak. The carrier may not feel it at the moment, but at some point in time, depending on the type of MS, they can or will be taken hostage by its symptoms.
MS is also still classified as severe, and as an autoimmune illness as the body’s immune system attacks itself. MS carries many, many tags, often brutal, damaging and very convincing ones, and this is before there’s even talk about the severity of its symptoms.
Needless to say, people just diagnosed with MS, even those with relapsing/remitting MS, live in fear of what will come next. You need to unlearn being fearful each time you feel a new symptom, or when an old one reappears in a worse state than before. The first year of life with MS is learning what a symptom is, and when it becomes a relapse. Considering how many people with MS do not know what a real relapse is, means that even they need to be educated about their own illness. Life with MS is a steep learning curve.
Sadly, those close to people with MS, are also impacted, as such a diagnosis touches more people than just the carrier of the illness. The unpredictability of MS, not knowing if or when you will end up in a wheelchair, blind in one eye or with excruciating facial pain, means that others need to be informed of family and life strategies, as well as work and house adaptations. This isn’t always easy however, as some people are more inclined than others in being there for you when push comes to shove.
Talking down on people’s illness is something I avoid at all costs, as everyone has some cross to bear. Because of other people’s reactions towards my own illnesses, character and lifestyle, I simply know that blaming an ill person for being sick can destroy many things. Whatever people may get up to in their life, never attack them on their weakest point, i.e. an incurable illness they never asked for. It’s low, it’s patronising and it doesn’t speak well of the person doing it. In fact, it says more about the person being this offensive than the person they blame.
As MS Awareness Month and MS Awareness Week have now kicked off, we need to inform, introduce, teach, show and reset people’s attention and request support from others to reduce ignorance. We as people with MS already support each other in the same boat, but we want – and need – more. And you, as non-MSer can do so.
Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological/MS services in Ireland. By highlighting difficult issues that come with such a diagnosis, she hopes her tenacity can bring some dignity to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.
©WVE and Ireland, Multiple Sclerosis & Me, 2011-2015. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.