Hi, I Have MS...
Last updated: February 2023
Not many people other than close family and friends knows that "Calie" is not my birth name. My true first name is "Calissa", but I’ve always gone by "Calie" for short. I despised my name growing up. "Calie" was what I was called since birth, so I never understood why my parents had to do something so terrible to me. Didn’t they know that the name "Calissa" was just plain weird?!
It was mortifying to me
Each new school year, I would make myself sick dreading the new teacher calling our names for attendance. I knew they would call "Calissa", and I would have to tell her that I go by "Calie", and it was mortifying to me that my peers would know the name I went by was short for something so (at the time) hideous. I seriously begged my parents on more than one occasion to let me go to the courthouse and legally change it to just "Calie". But, I knew "Calissa" was the name I was given, and whether I hated it or not, I would always know it was my given name...even if I changed it on a piece of paper. Of course, once I graduated high school, I realized my name wasn’t so terrible after all. It was on all of my legal documents, so I decided to just embrace it. Eventually, people even started telling me they thought it was a beautiful name, so that helped too! It's humorous now, thinking how much time I wasted worrying over a name that wasn’t all that bad to begin with. It’s unique, and it's mine, so after years of finding it torturous and utterly repelling, I said, "to heck with it," and decided "Calissa" was an ok name to have. Obviously, I still go by "Calie"- it’s what I’m used to- but when people call my real name I no longer hide my face in shame.
Hiding and denying my diagnosis
It was equal for me with the fact that I have MS. For the first eleven years after diagnosis, it was not something I wanted known unless absolutely necessary. It was a fact that I hid and denied. But, then I realized how exhausting being embarrassed and upset over something inevitable can be. Why fret and waste negative energy on something that I can’t change? It’s not something I chose, but it’s something I was given. It not only caused me severe mental stress, but the same was true both psychologically and physically. Life gives us so many lemons; sour, sour issues and things we think we can’t possibly swallow, but once we figure out that those sour lemons can be something sweet and delicious too, it changes everything.
I’ve mentioned this before, but there is something so freeing and glorious about letting go of something you’ve been holding onto. Especially if that something is a secret of some sort. My “coming out” with my MS day was one of the best days of my life! January 27th, 2016 is the day I found myself free from the weight and the burden of hiding my MS. I had seen an interview with Jamie Lynn Sigler on the Today Show about her MS diagnosis, and her story resonated with me. She also admitted how she hid for a time the fact that she had MS, and like me, having a child and watching them grow made her realize the bigger picture.
My body hasn't failed me
It's liberating when you say to yourself, my body hasn’t failed me because I have MS. When those thoughts are pivoted in a positive direction and you do some soul searching, you realize, I do have a purpose! And personally, watching what all I’ve been through both past and present, I no longer look at myself in a negative light. When I hid my MS, I was just creating pessimism. Everything I felt about it was in negative emotions. Letting the world know about what I had been hiding, and what I had been going through, is what gave me the ability to see things differently. Now I see all that I’ve been through, and all that I’m capable of despite that. We are all capable of wonderful things, in spite of this disease and that is something I really want to shed light on.
We are not defined by MS
We are not defined or owned by this disease, despite it feeling like that at times. When we look at things with a negative perspective, then of course we will have a negative outlook. The negative unspoken words inside of our heads have the ability to shape how we think about everything around us. With MS comes a lot of negative emotions; I know because I’ve experienced them myself. But, did you know that the way we view ourselves is so powerful psychologically that it can affect us physically, too? Destructive thinking causes negative outcomes. In a study I read about, those who focused mainly on negative outcomes reported having lower self-esteem and self-satisfaction. They also had higher instances of psychological trauma. The study stated, “The variety of psychological problems and negative thinking creates could impact your ability to lead a normal daily life.” To me, that was pretty compelling statement. This kind of repeated negative thinking clouds our vision and affects the way we interact with ourselves and the world around us. A book I'm reading, had a great quote that really hit me in the feels, and I found it perfect to go with this subject:
"We never know what will happen next, what we will see, and what important person will come into our life, or what important person we will lose. Life is change, constant change, and unless we are lucky enough to find comedy in it, change is nearly always a drama, if not a tragedy. But after everything, and even when the skies turn scarlet and threatening, I still believe if we are lucky enough to be alive, we must give thanks for the miracle of every moment of every day, no matter how flawed. And we must have faith in God, and in the Universe, and in a better tomorrow, even if that faith is not always deserved."
Changing your thinking
If you are someone like I once was, that experiences the dark and gloomy thoughts about MS, there are a number of different ways you can change your way of thinking. And the biggest way to change those daily negative thoughts and reactions is to evaluate yourself and figure out how to put a positive spin on whatever it may be. Turn that negativity into humor. While MS is not something to laugh at necessarily, allowing yourself to laugh at negativity and to make light of a negative situation will greatly change your outlook. Surround yourself with a positive and uplifting environment.
Facing MS head on
Pessimism breeds in groups of negative people, so eliminate those people from your life. To change our mind, and to make it better, we must first change our life. I have a purpose, you have a purpose, and MS has the ability of giving us an even greater purpose. We just have to choose to see it that way. The day I faced my MS head on, and decided to do something greater with what I was given, was the day that forever changed the way I think, the way I act, and the way I feel. Now I'm no longer afraid to let people know soon after meeting, that MS is a part of my life. If they don't like it, then shame on them! I've even found that being up front with it has helped my relationships. If you haven't made it to that point yet, I understand, but I encourage you to pursue that. Pursue letting go of hiding MS. I promise, it will change your life. And, it might even brighten the the way you view things, and maybe just even brighten the way you feel.
"By opening our hearts, revealing our scars, we are made human and flawed and whole.” -Beneath a Scarlet Sky: A Novel
Do you ever have moments where you question your self worth because of your MS?