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The 6 Stages of Moving Beyond the Darkness of Multiple Sclerosis

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At only 22, an unexpected hurdle forced its way into my life — unannounced and unwelcome. I didn’t understand what was happening. In the context of my life, it just didn’t make sense.

Multiple sclerosis. I was blindsided by its arrival. It was during a time in my life which should have been carefree and not dominated by the uncertainty of a disease.

For the next four years I endured an avalanche of aggressive relapses. Hospital and rehab became a revolving door. I was too familiar with lying in hospital beds paralyzed, both physically and emotionally. Then sitting in wheelchairs having to learn how to walk again (and again and again).

Frustration quickly dominated my existence. MS made keeping up with my life — a new corporate career and inner city living — difficult and at times impossible. During this time MS overshadowed my identity. I found it difficult to enjoy life and was increasingly fearful of my future.

Yet today my life is no longer dominated by this negative energy. The way I feel and respond to MS and life today is unrecognizable to years earlier. When told I had MS I immediately grieved and was taunted by the dreams which had once motivated and inspired me. Yet there was no need for such anguish.

My life has been punctuated by incredible experiences I could never have imagined when diagnosed with MS. I left corporate life and retrained as a social worker. I travelled the world, living in Edinburgh and also volunteered with orphans in Romania. I serendipitously met my life partner. And I am now living in a seaside town having completed writing my first book.

But always inquisitive, it wasn’t enough for me to tell myself and others that life was great. That life had worked out OK. I wanted to make sense of my reality, and find out why.

I began to reflect on my journey and realized that over the years I have moved through the following six stages:

1. Hurdle

MS was definitely an enormous obstacle that interrupted my life. Its presence made continuing on with everyday life difficult and at times impossible. It also created despondency by blocking the visions and plans I had for my future.

2. Engagement

My life became dominated by MS. Although increasing my understanding of my disease was at times beneficial, my condition became all-consuming. Overtaking my every thought and encroaching upon my identity.

3. Agitation

I became increasingly frustrated. MS made living the life I had created, and the dreams and plans for my future, impossible. And without realizing, I had created a never-ending cycle of relapses and agitation.

4. Letting go

I was faced with a clear choice. Continue on as is, enduring relentless relapses and frustration. Or prioritize what is important — my health and well-being — and let go of any aspect of my life that was contributing to negative energy.

5. Taking time

Having prioritized what was important in my life, I was still experiencing relapses. I realized that I needed to take time to focus inwardly, as it was pointless stripping back and prioritizing what was important, only to rebuild my life based on how I have always interacted with, thought about and approached my hurdle and life. MS became a vehicle for personal growth physically, emotionally and spiritually.

6. Hope

After living with MS for over 15 years I realized that I was no longer defined by this disease. I had moved beyond the darkness of MS. I was able to find joy in my life and have a genuine excitement about my future.

The positive I take from my journey is the insight I have gained at each of these stages. And it is these discoveries that explain why my response to MS and life is unrecognizable compared to years earlier.

Working as a social worker, and just being aware of other peoples’ stories, I know we all experience hurdles that interrupt our lives. And it is how we respond to these difficulties that define our life experiences.

Accepting that my response to MS was going to affect my life experience has been crucial in my journey beyond the darkness of MS. I never want MS to define who I am or create a life filled with negativity and fear. And now with the stages of H.E.A.L.T.H. I have the confidence that I will continue to evolve, learn from my experiences and change how I interact with and experience life.

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Originally published: August 9, 2016
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