Many MS Symptoms Are Invisible: We Need to Share Our Stories

Like many people with multiple sclerosis, my symptoms are mostly invisible. Many days, fatigue overwhelms me and I have pain somewhere. I tingle all over. I have weird sensory symptoms such as the feeling of water rushing down my back, itchy skin, and the top of my ear feels as if it’s being pierced over and over. Does anyone else get that?

From the outside, I look like any other 29-year-old woman. I don’t look sick. I don’t require a cane or a wheelchair. People are quick to forget what I’ve just told them about being in pain or feeling too weak to stand. 

If symptoms are invisible, how are others supposed to know that something is wrong with you unless you tell them?

This is MS Awareness Week, but raising awareness is only one part of the solution. I believe it is our obligation to educate others. If people understood what it was like to live with a chronic, invisible condition, would they be more kind?

“Nothing can change until the unspoken is said … ” — Keith J. Cunningham 

If we aren’t raising awareness and educating others, nothing can change. Why would it? 

Sharing our stories can have an impact on the world. You don’t have to run a marathon or participate in a 24-hour dance-a-thon (unless that’s your jam). Whether you tell a friend, make a video for social media, or shout it from the rooftops, you’re educating others. Sharing your story could influence government policy, improve healthcare, or change perceptions about disabilities. On a smaller — but no less important — scale, it could help someone else come to terms with their condition. 

When you start talking about your story, you help those with MS and you show others the importance of being kind. Maybe you’ll start a podcast and share other people’s stories. We never know what’s going on in someone else’s life. We only see what’s in front of us.

I understand that not everyone wants to or has the confidence to share their story. I know I didn’t.

After my diagnosis, I hid my illness. I was scared of what people would think. I worried they would presume I wasn’t capable, and I didn’t want to be pitied. It wasn’t until someone asked me on social media about my experience that I started to open up. Before I knew it, people began reaching out to tell me about their illnesses. They said they had not shared with anyone before because they thought people wouldn’t get it. It gave me an opportunity to help others and helped me come to terms with my own illness. 

That was when I realized that my story was bigger than me and that my experiences could help people.

If you’d like to learn how to share your story, I encourage you to join the Enabled Warriors Facebook group.

What’s your diagnosis story? Let me know in the comments below. 

***

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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.