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Sunday, July 8, 2012

The Role of Sharing In Healing - a Patient's story

By: Denise A. Coleman
July 2012

I have lived with chronic illnesses since I was 13 years old and it wasn’t until relatively recently that I fully realized how important it is to have others in my life who share the same, or similar, illness.   After coming to terms with the fact that I had both Chronic Pain from a series of back surgeries, and Multiple Sclerosis (MS), I had to identify ways in which I could best live with them and move forward in a way that worked best for me.

I became an advocate with the National MS Society and the American Pain Foundation and was able to participate in various campaigns and programs around the country, strengthening the goals and objectives I had lain out in the program I formed in 2002, The Chronic Pain and MS Awareness Project. I had to take a step back a month ago when the American Pain Foundation announced its closing; I did a lot of my advocacy work through this organization and I didn’t know where to turn for the structure it provided.

This came during a time that I was also facing a significant set back in my own health, and this is what I will address today.  All of us have set backs in our lives; set backs when we are faced with disappointments and must make decisions as to how we will proceed or will we instead decide to go in another direction or not go anywhere at all.  This was where I found myself these past six months and I must say I did not know where I was going to go or what direction I wanted to go in.  I can’t say that I am completely out of the woods, but once again I am making progress and looking forward to taking steps toward a full “recovery.”

Everyone is different, I know, and I will feel recovered when I am once again doing the things that make me feel like I am helping others reach their potential, for that helps me reach mine. Over the years being able to talk to others about the issues I was dealing with, whether it was physical, emotional or spiritual, has helped me.   This help might have been though a support group, a spiritual leader, and in my case it has often been through an email MS group that I have belonged to for the past 11 years—a group we call The Hang In There Group

The HITsters, our abbreviated name, is a group that has grown to as many as 18 women at times, who live all around the country, and represent various age groups, most of us in our 50s and 60s now, and we have witnessed each other go through various peaks and valleys of this disease over the years.  In sadness we shared the loss of several of our beloved members over the years, women who had become the dearest of friends, even though for the most part we never met them in person.

We speak of them often and remember with love how brave they were through the years and how much they lost as their illness progressed and took more of their life from them.

 I often wonder how I would have learned about the realities of MS, about how to deal with issues such as bladder leakage, numbness and gradual loss of mobility, and other symptoms without these dear women of Hang In There.

I don’t know if I have told the HITsters how important they have been to me over the years, or if they realize that the conversations about our symptoms and the impact MS has had on each of our lives have helped me get through some of the most difficult days.  I live alone and often rely on these friends as I would rely on a roommate, and I value the opinions and advice they have given me over the years. 

I am writing this today because I know there are many of you who don’t have such a group and I encourage you to form one.  If you don’t belong to a Support Group that meets in person, reach out to your local chapter of the MS Society for help in identifying others who might be interested in forming such a group.  

I hope you each have many people you can confide in and from whom you can receive support and love.  I am fortunate that I have a large family and many friends who are there for me, but until I found the HITsters, I didn’t know anyone who had MS, and I didn’t realize how important that was.  Reach out to others who share your illness and you will be surprised at how easy it is to share your thoughts and feelings, even those you never dreamed you would share with anyone.
Denise A. Coleman
110 Cedar Shake Court
Huntington Station, NY 11746

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