By Cathy Chapman, Former Patient Representative for The MSA Coalition
Several years ago, I began journaling my experiences with MSA, beginning with my diagnosis, and continuing with how it impacted my life, what was most important to me, my favorite verses, and what I’m thankful for. This was helpful for me to put things in perspective and to share my experiences.
I have found it to be therapeutic to put into words how I am feeling at any point in time and to be able to look back on all of it later on. Everyone has their own way of coping with their feelings, but this is one thing that I have personally found to be helpful.
We are all on the same path, but our individual journeys are all different. Each of you have your own experience with your disease progression, how you cope, what makes things easier for your, the important people in your life, and anything that is important to you. You can choose to journal or share any of this or none of this in any way that you choose. It is your story, and you have the right to share it and experience it on your own terms.
It is my privilege to share parts of my personal story with all of you with the help of the MSA Coalition. I hope that it is helpful to listen to my story and the stories of others who chose to share theirs, and I hope that it helps make you feel less alone in your journey. It takes strength to live with illness, but it also takes strength to share your story of that illness.
If you feel like it would be helpful to you to write down your experiences either just for yourself in a journal or to share with others, I encourage you to do so. If you feel moved to do so, the MSA-Coalition is always seeking submissions for patient stories to share via blog posts, on the website, and through email. We all have a unique story to tell, but there are common threads linking all of us, and there may be something in your story that resonates with and helps someone else in their journey.
None of use chose to be on this particular, often difficult journey. But it is the support, encouragement, and understanding that we gain from each other, with the stories of your journey that teaches us that we are not alone.