Does MY Story Matter?
Yesterday was World MS Day. Although MS is something that I think about each day [some days more than other days], today I reflected a bit more on the past 3 years and all of the changes that have occurred in my life since my diagnosis. Many of the changes have been for the better; the birth of my 2 children is most definitely at the top of that list! Finding my voice in self-advocacy and in sharing my story has also been a change for good. I have not always been able to convince myself that my story is worth sharing or one that is going to matter to anyone outside of my immediate circle of friends and family. I am now convinced otherwise and really want to encourage many other people to speak up.
Speak Up to encourage those who have just been diagnosed. I remember the day well-sitting at my desk and receiving THE phone call. MRI showed areas of demyelination [one of the words I actually knew from the MRI results because my sister is also living with MS]. My world turned upside down in an instant. It is likely MS. What did I do? Starting Googling of course. I Googled The National MS Society [NMSS], reading every word of the website over and over again. I Googled about having children when living with MS, as that was where my husband and I were at in life; trying to start our family. I was Searching, Seeking REAL stories from other people who had been exactly where I was sitting. They did not have to be an 'expert' as what I really wanted was to read real experiences and find that I was not alone even though I felt so alone at that moment.
Speak Up to ensure MS research stays funded. Raising awareness with legislatures can seem daunting BUT they are people, just like me and you, trying to help other people. If they are not aware of the needs then they cannot enact change. Work with your local chapter of the NMSS if you need help knowing where to start. They will be more than happy to help you! Funding also comes from events and fundraising for them. It can seem hard to ask for money but when you know where the money is going and all of the good that comes from it, it's much easier! Don't be afraid to remind people about the tax benefits of donations also!
Speak Up on the good days AND the not-so-good. I am guilty of not always sharing the challenging times in life on social media or even in-person. My blog is helping me get over that and realize again, that I am not alone in any difficulty that comes my way. Share the things you do to promote wellbeing & balance in life-share when these things don't always work so you can be encouraged to keep trying! Share about experiences with medications and alternative therapies for MS. Something that works for 1 person certainly may not for another BUT share so knowledge is spread. Laugh & Cry together.
Speak Up in a way that works for YOU. Not everyone is comfortable sharing their experiences in front of a crowd, online, or with those they do not know. I hope you can find comfort in sharing with those closest to you though. Share so people who care about you know your story and can support you each step of this journey.
[Angela Brandt is a mother of 2 young children [2-year-old and 7-month-old] trying to focus on the important things in life and de-clutter the rest. Sorting through all things life/children/work/MS is why she blogs at motherhoodMS.com Come say HI sometime!]
Do you have a fear of needles and take medication that requires injection?