Wednesday, October 12, 2011

From Grief to Growth- The Impact of Chronic Illness

Photo Credit: Julia Freeman-Woolpert, Concord, NH, US
Understanding the impact that significant life events have on those around us is particularly difficult for people who are living with a chronic illness or disability.  When I was first diagnosed with MS someone said to me, MS should really be called ME because it is so consuming.  Indeed learning to adjust to new experiences of what is normal is a difficult process.  It is one that can be viewed as akin to the grief process.

Elisabeth Kubler Ross describes the five stages of grieving as denial, anger, bargaining, depression and acceptance.  In grieving losses through death, these stages do not occur in clearly defined, neat sequences but they come in waves along the journey of recovery.  In dealing with chronic illness these stages continue along a person's life span as the illness continues to present different challenges, losses and imposes perpetual change on our lives.  All this grieving is hard work and it is often as consuming as dealing with loss of life.  After all the perpetual changes redefine, and challenge our self image, our ability to interact with the world, and our ability to function in day to day tasks.

As we work to accept these complex changes so many emotions rise up to the surface.  We question how people view us, we question our abilities and needs, we deal with layers of red tape to meet our basic needs and we struggle to manage our activities of daily living. 

Most people that I know would say that their illness or disability has had little impact on their friends, families and caregivers.  This ideology was perplexing to me to some extent. But as I opened my mind to hear their perspectives I learned how painful it was for some to see how people around them were impacted.  Others, tell me that their kids just accept that this is just how things are and they manage to live their lives without it impacting them.

I have always maintained a conscious effort to be in tune with how my disability was impacting those around me.  I was angry that my kids had to have this intrusion in their young lives and I was ever aware of the impact it has had on them.  My daughter was 14 when I was diagnosed.  She was entering into her grade nine year of school.  This was a monumental new chapter in her life.  High school is a big deal, and she needed me to be there for her. She wanted me to go shopping for new clothes to make sure she was putting her best foot forward.  She wanted to tell me all about her teachers, friends and the events in her life.  All this at a time when hormones and emotions were in high gear and life was becoming more complicated. 

I wanted so badly to be a part of everything in her life, but I was recovering from an aggressive attack of Multiple Sclerosis.  I was living with paralysis on my left side, very limited mobility, extreme fatigue, and a host of other scary neurological symptoms.  In addition, I was weaving my way through a host of powerful emotions and living with some daunting medication side effects.  Despite my greatest desires to minimize the impact on her and her brother, the fact is that this kind of event is not the norm.  As such it is uncharted territory for everyone involved.  My kids, my parents, my extended family and my friends all to a greater or lesser degree were impacted, molded and shaped by this unwanted, unexpected and unwelcome turn in my health. 

This intrusion has been a negative, horrible experience but from this we have all been aged like fine wine.  Inevitably some of the effects of living with chronic illness have made the weave that binds us a little tighter.  I am far more sensitive to the struggle and challenges of others.  I am less likely become angry and annoyed with others.  I am more open to hear and see things from the perspective of others. .... But enough about ME.  My children are showing how resilient they are in the face of challenges.  They rise up beyond my hopes and take on more responsibility time and time again.  They handle themselves well with people of all ages and abilities.  They are mature, responsible, reliable people who rarely take anything for granted.  I feel grateful to see them grow up.

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These people have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern, beautiful people do not just happen."   
Elizabeth Kubler-Ross


Kristi Kastler said...

"Beautiful people do not just happen."...Kind of sums it all up! :O)

Kim said...

Thank you Kristi, isn't that the truth.

nicole said...

At times I must admit I don't appreciate the impact of my illness on certain family members, I couldn't even imagine having kids. I'm so consumed with ME.

Mark said...

Kim: Know both your children and seeing how they and you have worked so hard to maintain a regular positive outlook on life is a TRUE credit to the three of you

Kim said...

Thanks Mark. :)

Hold my hand: a social worker's blog said...

This is such a heartfelt post. I am glad I stopped by. There's so much to learn from you and how you are facing your health challenges.

It makes me think of how many times we take life, health, relationships, etc for granted.



Anonymous said...

Just discovered your blog, Kim. These are deep thoughts. As I deal with progressive MS, I find the constant grieving process exhausting, yet oddly intriguing. You have an interesting perspective with your knowledge and background. I am anxious to read more here.

“There is no greater agony than bearing an untold story inside you.” Maya Angelou