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Whether you are newly diagnosed or have been living with MS for several years, there will likely be a time and place when you will want or need to share your story about MS and how it affects you. For some, this revelation and declaration may come immediately after a diagnosis, for others, it may take longer to “come out.” Everyone has a different story and a different timeline for sharing, but I’m always curious as to what our stories are and how we choose to communicate them to others. Also, do we ever think about what narratives others are creating about us and our MS? Facts are important, yet they seem to do little when sharing our stories to the world – especially to those who do not have MS. Thus, our storylines should tell more than the scientific evidence, facts, or lack thereof with regards to MS. Our storylines belong to each of us in our own way and will differ and evolve over time. 

We must learn to look at both sides of the story and narrative

I think it’s somewhat normal for those who are newly diagnosed to follow the narrative of other people. When we are newly diagnosed, our experiences have only just begun and it’s sometimes easier to lean on other storylines from people or resources who have years under their belt. This can be counterproductive and can hinder our personal learning about our own MS and can blur the lines in recognizing the experiences we are dealing with now. 

Understanding MS from the inside and the outside perspective

How open are you to knowing or hearing about what others think of your MS? What we deal with on a day-to-day basis may look different to those we are closest to as well as those who only know us as this “other person with MS.” My perspective of how MS is affecting me today may look and sound completely different to those who are connected to me. What they see may not be what is really going on and that’s okay. We can’t teach everyone what our symptoms feel like or how to understand everything we are going through. Yes, we have MS, but I personally think others see us for who we are, not this disease we have. So, feel free to talk about your MS when the time calls for it. However, don’t make MS your “everything.” It can be a turn-off and will only leave you and others feeling more frustrated.

Connecting and communicating with others

Who do you interact with on a regular basis? For some, it may be family, personal friends, social networks, work colleagues, online friends, and patient communities. It’s important to know who your connections are and how you communicate with them about your MS. Not everyone wants to know every detail about what you are dealing with. Not everyone wants to know the science of this disease or latest medical research going on. Sometimes, the more we try to get others to understand what we go through, we wind up overexplaining everything, which only frustrates us and our audience as well. There’s a time and place, and a person who is willing and able to listen. Pay attention to this, refrain sometimes, and understand how your narrative affects others in your world so as to avoid coming across as defensive. The more we learn how to live with our MS, the more we should also learn how it affects others.

Our identity versus other narratives

I look back over the years and I’m grateful for all the relationships I have forged throughout the chronic illness and MS communities. These friendships have lasted for more than a decade. I know in my heart they will continue on for years to come. It’s a beautiful dance when our stories can connect with others without guilt, shame, false truths, or otherwise. The more we can embrace our own identity, no matter what the other narrative may be, that is a truth no one can take away. It takes time to understand this. It also takes a good support system to make this possible. 

MS is often portrayed as a devastating illness, and those who have MS live a lonely existence. I beg to differ. I have lived with MS for 23 years and have learned who I am as a person first, a patient second. My identity versus other narratives does not matter. I know who I am and I know I am enough. 

Your stories are your truth, you are enough, and you don’t have to stand alone in your narrative.