Using Writing to Help Cope with Multiple Sclerosis

Merely Me Health Guide
  • There are a million different topics to write about.  Why MS?  Well the obvious reason is that I have this disease.  I have the unique perspective to write about my first hand experiences.  Nobody can truly tell you what this disease is like without having it themselves.  All the facts and figures and technical talk cannot tell you what you truly want to know and that is:  What is it like to have MS?


    Been doing some soul searching lately about writing on this topic.


    I have to tell you that on some days I don't want to write about MS.  Why?  Because it can be damned depressing.  It is like therapy in a way.  In writing about MS, I am immediately immersed in my fears, my anger, and my anguish of having this particular disease.  My writing brings the cavalcade of emotions to my front row and center.  I am not able to take many side trips to the land of denial because as a health writer I am expected to have my head together about all this.

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    I am here to tell you, quite honestly, that I don't.


    There are days I want to cry, scream, and rampage like Godzilla.  I am not always so accepting that I have this disease.  And still yet on other days, I still feel a curious shock and emotional numbness as though this were all some sort of bad fairy tale, the kind with a potentially unhappy ending. 


    I have been writing for a very long time.  But I have only been writing about MS for under two years now.  I also write about depression and autism.  Sometimes I write about silly things like why dogs chew the eyes off of stuffed animals or about my fondness for peanut butter cups.  I need lightheartedness to combat the serious nature of all that I am currently dealing with.


    So back to my original question.  Why do I write about MS?  I suppose I write for selfish reasons.  I am writing to get through this myself.  I am writing so that I don't scream out loud.  I can  best express myself here through this medium.  But more so, and I know this sounds like a cliché, but I honestly want to help people. I do want to make a difference.  I know what it is like to sit there hearing words from a doctor that are life changing.  I know what it feels like to come home with that knowledge that you have this incurable (for now) disease and wondering, "Where do I go from here?"  How do I live my life with MS?  Now believe me, I don't have all the answers.  I may not have any answers.  I am not a doctor.  I am not a neurologist.  I am not a researcher on the verge of a cure for MS.  And despite my role name here, I am not an expert.


    I am simply a person, just like you, who was told that I have Multiple Sclerosis


    The best way to lighten the load, in my opinion, is to share it.  It helps to travel together.  One of my goals here on this site is to promote a sense of community.  When people come together for a shared purpose, amazing things can happen. 


    A curious thing happens when people discuss things like a shared illness or disorder.  There is the potential for a weird sort of "pain competition."  Who has it worse?  Who has earned the right to say they have this disease?  Who has earned the right to talk about it?  I think this mentality misses the boat entirely.  There is no competition.  Whether you are just starting out with this disease or have had it for twenty years, it is good and healthy to share your experience.  Nobody's experience will be just like yours.  Your thoughts and words have value and meaning.


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    One of the silver linings to having this disease is that you can take your experience and use it to connect with and to help others.  We all suffer.  Everyone has something or will have something medically wrong with them in the future.  It isn't the suffering which bonds people; it is what we do with it.  How do we choose to cope? 


    My way of coping is to write about the experience of having Multiple Sclerosis and share it here with you.  I encourage you to do the same.  It truly helps. 

Published On: November 24, 2008