By: Cathy Chapman, MSA Coalition Patient Representative
In the beginning, MSA defined who I was…
After all the doctors visits and endless testing, I was told that this is a rare disease, and there is no treatment. Then, the reality set in. I would no longer be able to work or drive, and my plans for retirement were gone – not to mention the emotional and physical toll it takes to get through the day. I had become my illness.
After a while, I reached acceptance. I couldn’t change the physical symptoms I experienced, but I could choose how I reacted to them and how to cope. No longer was MSA going to define who I was.
I’ve listed some of the things that have been very helpful. Not only did these ideas give me back some control but also a new perspective:
- Face It Head On
Learn everything you can about MSA - Keep a Daily Journal
Write down anything that is important to you like how you are feeling (physically or emotionally) or about your surrounds (e.g., nature, the weather, the people in your life). Take note of what and who you are grateful for. - Gain Knowledge and Support from Others
Learning from other patients or care partners and having the support of family and friends on this journey has given me encouragement and inspiration. - Pace Yourself
Plan to rest the day before and after an outing. Take you time accomplishing tasks or try finding different ways to accomplish what you need. - Take It One Day At A Time
- Live in the Moment
Every day of your life is precious. Spend time with family and make new friends on this journey. Enjoy holidays and birthdays and remember that MSA does not define who you are. - Remember, YOUR JOURNEY IS YOURS AND YOU ARE YOUR OWN BEST ADVOCATE
Book Recommendation:
Leaves Falling Gently
by Susan Bauer-Wu PHD, RN
