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MS and the Stages of Grief, Growth, and Gratitude

By Mary Pettigrew
whoislimos-kFVmYjK6hZ8-unsplash.jpgAll of us respond to change in different ways. Whether it be expected or not, change is real and is an inevitable part of life. When we are faced with life-changing events involving a diagnosis of an incurable disease or disability, the effect is powerful and quite multifaceted. When one is diagnosed with multiple sclerosis the “fear of the unknown” remains high on the list of questions and concerns. The course of the disease is unpredictable in nature and as many of us are keenly aware, MS varies so uniquely from person to person. It’s important to realize this and not compare yourself to others. Yes, when we are diagnosed with an illness like MS, it is an event which could change every aspect of our lives, our future, and forever alter the world we once knew. Please note I didn’t use the word “negatively,” nor did I infer a negative tone in the previous sentence! That’s up to you to determine – whether positive, indifferent or negative, you own it, and you can alter it as well.

Time and time again, I read comments from others who continue to reiterate how they feel stuck, unable to look towards the future and the possibilities worth exploring despite being diagnosed with MS or other chronic illnesses and disabilities. Despite the outpouring of positivity from others in the MS communities, some people linger in the melancholy. I realize we can’t help everyone, but it’s still worth the try. The phrases I hear or read most often come across as depression, or feelings of grief and loss of purpose. Sometimes these declarations contain phrases such as:
  • I used to be…
  • I can’t …
  • I’m worthless…
  • I’m a burden…

First of all, by no means am I passing judgement or discounting these very real emotions, physical limitations, and feelings of frustration expressed by so many because I too remained lost in my own abyss for nearly nine years before finding my glimmer of light at the end of that dark tunnel. Long story short, I was diagnosed with MS in 2001. MS resources were quite limited back then. As I reflect back to that time I realize just how lonely and uncomfortably numb I was in my own existence. My career and marriage were swiftly crumbling, no one could understand what was going on with me, and I couldn’t understand what was going on with myself. Life seemed to become more unbearable with each passing day until my neurologist took notice of my situation. She urged me to consider therapy and to begin the process of filing for disability benefits. So, in 2003 I filed my paperwork with the Social Security Administration. That was an experience I’ll never forget. After approximately two years of seemingly endless denials, appeals, legal counsel, and a court hearing, I was finally approved in 2005, yet the celebration was short-lived as my personal life began to spiral downward. I spent many years navigating through these five stages of grief (and then some).
  • Denial and isolation
  • Anger
  • Bargaining
  • Depression
  • Acceptance

An excellent post I found to be quite helpful on this matter is “The 5 Stages of Grief & Loss” by Julie Axelrod. It’s a short piece, one of which I encourage you to read and share with others. Keep in mind, people who are grieving do not necessarily go through the stages in the same order, nor do all people experience them all. There is no alarm clock to remind us when to start or stop with our grief – There is also no predetermined timeframe dictated or allotted as to how long we are allowed to grieve. This journey belongs to you as an individual and only to you. 

To say my husband was a poor caregiver who couldn’t fathom being married to a wife with MS would be putting it mildly. He was embarrassed as to how my health affected his lifestyle. The worse the situation, the faster he would disappear, often leaving me alone to fend for myself. It wasn’t long before I found comfort and contentment in the solitude. In fact, I began to prefer it. This was my moment. This was my time to ponder my own wants and needs for a change. I had been lost for too long, so in 2009 I filed for divorce, immersed myself in writing, therapy, music, and discovered some online communities that I found to be somewhat life-changing. A whole new world began to open up for me and I haven’t looked back. Little did I realize I was actually in the midst of self-reinvention. Once you begin to explore uncharted territories, you might find some new chapters still worth writing in life. 

The point being, find yourself! This article contains just a few ideas and examples of the valuable tools you too can learn with ideas and coping skills needed to strengthen your own resilience as you face challenges which may come your way. Life is still meant to be lived and you have purpose. Of course, may it be written and understood that many of us with MS must rely on others (caregivers, family, etc.) when it comes to mobility, home, or medical assistance needs, but we must also remember we do not need to rely on others for our own happiness and well-being.