The Role of Sharing In Healing – an MS Patient’s story

The Role of Sharing In Healing

Denise A. Coleman

June 3, 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 that 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 would like to 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 whether I would continue in this work at all.  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 am dealing with, whether it was physical, emotional or spiritual, has
helped me.   This help can often be through 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 called 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.

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