What I wish I’d been told after my diagnosis of multiple sclerosis

I remember the day of my relapsing-remitting multiple sclerosis diagnosis, when I didn’t understand the weight of what I’d been told. I was only 17 years old and didn’t know what questions to ask, what the future held, or what I should’ve felt after hearing those words. Aside from feeling scared, overwhelmed, and numb, I just knew that I wanted to be OK.

Looking back, here’s what I wish someone had told me that day, and in the days and months that followed.

What I needed to know

First and foremost, I wish I’d known that it’s OK to feel a multitude of emotions after a multiple sclerosis (MS) diagnosis, because no one can prepare us for its emotional and mental impact. In my case, I was diagnosed around Thanksgiving in 2016, and a doctor gave me until the end of the year — a few weeks, really — to “feel sorry for myself.”

I don’t think I gave myself the space to properly process my new reality. There’s no set timeline to cope with that, but I know we shouldn’t rush through it. I wish I’d known that it’s OK to cry and feel angry, numb, or anything else.

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Second, I wish I’d had a better understanding that everyone’s MS is different. While that might be common sense now, I didn’t fully grasp it until I began interacting with the MS community. We all have unique experiences and stories because our MS journeys are our own.

However, even though we may experience MS differently, we can still understand and provide support for one another. Having and building a community with people who get it, whether through support groups, social media, or online forums, is powerful.

I also wish I’d known that it’s OK to ask for help. I used to think that I had to prove to everyone and myself that I could do everything on my own, but that wasn’t the case; I never needed to prove my worth or ability to anyone. I learned that asking for help isn’t a sign of weakness, but a sign of strength and bravery.

Asking for help isn’t giving up, whether it’s emotional support, a ride to the doctor’s office, company during an appointment, or assistance with daily chores. Help is merely an adaptation to our needs, and seeking it signifies courage because we’re able to identify what should change.

Lastly, I wish I’d known that MS doesn’t change who we are at our core. It might alter how we move through, experience, and interact with the world, but we’re still the same. Every aspect of our personality that makes us who we are, such as our dreams, humor, intelligence, creativity, and more, are still a part of us. On the days when we don’t feel like ourselves, deep down we’re still in there. We stay who we are, and we are enough — exactly the way we are.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.