Its been over a month since my first post... I had been so nervous about sharing my story to my three hundred-some social followers and friends who didn’t know. I thought I was afraid that people would feel sorry for me or see me as “having MS” versus the me they saw before they knew.
I knew that my want to help others feel more hope was strong, but stronger than my fear of judgement?
I didn’t realize until recently that there has been a little voice in my head feeding that fear.
That voice had been whispering before, so I couldn’t clearly hear it. I knew it represented doubt and fear, but it wasn’t until recently that it came into sharper focus.
Last week the amazing Selma Blair hit the red carpet to share with the world what MS can look like. She showed courage and bravery beyond what many could or would do. She has brought more recognition in a few weeks than we have seen in years.
I couldn’t stop watching her interview, or her walk on the carpet… and her IG feed lit up! I was mesmerized with her tenacity.
It was then that the voice in my head became clear. It said “you have nothing to complain about… you aren’t ‘suffering’. People are going to look and think that you don’t really have it… or you are just looking for attention.”
It was at this point I realized my fears were smashing into one another. I didn’t want people to feel sorry for me that my disease may get worse, but I also didn’t want people thinking my disease isn’t real and doesn’t affect me on a regular basis in ways that weren’t so obvious.
With social media becoming a platform for all the MS and auto immune supporters to come together and share support and insight, I came across this quote that put it all into perspective for me.
Yes! Yes! That is exactly how I feel! I live my life as a unicorn, as if I don’t have it. I don’t give it energy or credit in my day-to-day life. I don’t let it define me or what I should be able to do. In fact, I try to go beyond what I “should “ be able to do. I challenge myself to push beyond my own limits. That is where I get my strength and courage from. From proving the disease wrong whenever possible.
That is the side I want people to see, but that doesn’t mean that is the only side.
I do have symptoms that affect me regularly and remind me of it. When Selma talked about having to pull her car over to rest because the fatigue can be so intense… I was almost relieved that it wasn’t just me. It has only happened a few times where I couldn’t make it home, but there are days where my body just says it done.. and then stops for a while.
The burning under the skin, the intense reaction to the heat… of course the nerve pain and spasms that just come out of nowhere, zap me and leave… and the least convenient is the frequent urination. I know where almost every coffee shop restroom and rest stop is on my regular routes. I try to keep it light, but I basically feel like I’m 9 months pregnant all the time.
I know that MS is one of many invisible illnesses, where in many cases the worst-case scenarios are the ones that get the most attention, but they don’t represent the norm. Of all the MS patients, more than 50% have relapse and remittance, which in most cases in not visible unless it is during a flare up. Even with progressive forms of the disease, people can appear totally healthy and fine to a casual onlooker.
1 in 5 people in North America have an autoimmune disease. That means you know a lot more people with one than you might realize. That’s because we don’t always talk about it or how it affect us. Most of us are just happy to be feeling good and enjoying life, because we know that that can change in an instant.
Awareness and education is key to understanding autoimmune diseases, both for those who suffer from one as well, as those who support someone who has one. March is MS awareness month, and now hopefully you have a better understanding of how it can affect people. It is such a difficult disease to frame with statistics, because it affects each person differently.
I am grateful every day that I have so few symptoms, and that it doesn’t prevent me from living the life I want to live.. but it absolutely impacts my everyday. I am either trying to pretend I don’t have it, or pushing through when it reminds me that I do.
I know its clichéd… but this is why we don’t judge a book by its cover… its story inside that matters.
Thanks for visiting:)