When Multiple Sclerosis Touches More Than Just Me: A Look at the Other Side

You know, it hit me the other day. I was sitting in bed the other night and I caught a glimpse of Mike's face when he thought I wasn't looking. It was a mix of love, worry, and something else... grief (a look I know well). And it got me thinking about this whole MS journey. It's not just my road to walk - it's a path that my loved ones are on too, whether they signed up for it or not. And let me tell you- it's not for everyone.

Let's be real for a second - Multiple Sclerosis sucks, it really does. But not just for me, it also sucks for the people who care about me. And I think it's time we talked about it.

There's this helplessness that I see in their eyes sometimes. My friends and family, they want to help, they really do. But MS isn't something you can just fix with chicken soup or a pep talk. I can see them struggling, wanting to do something, anything, but not knowing what. It's like they're standing on the sidelines of a game they don't know the rules to, and it's frustrating as hell for them.

Then there's the whole "things we used to do." Remember those spontaneous road trips? Last-minute go out and do something moments? The late-night dance parties? The Shaun T workout video sessions? Yeah, those are pretty much off the table for now. And I know my loved ones miss that version of me - the one who was always up for anything. I miss her too. But for them, it's like they're grieving the loss of a friend/daughter/sister/wife who's still sitting right in front of them.

Relationship dynamics start to change. My husband, who is absolutely amazing, sometimes feels more like a caregiver than a spouse. My kids have had to grow up faster than I'd like, learning to help out in ways they shouldn't have to at their age. My friends? Some of them have stepped up in amazing ways, while others have quietly faded into the background. And I get it, I do. It's a lot to handle.

But here's the thing I want my loved ones to know: you're allowed to grieve. You're allowed to be frustrated, angry, sad. Your feelings are valid, and acknowledging them doesn't make you a bad person. It makes you human.

Now, before I completely run you off, I want to share a little secret I've discovered. Are you ready? Those of us living with chronic illnesses? We often make the best friends. No, really! We've learned to value every moment, every interaction. We're expert listeners because we know how precious it is to be heard. You may have to tell us more than once if we're feeling a bit of brain fog, but we truly care. And a night in on the couch, just talking? That's not settling for us - that's paradise.

We've learned that true friendship isn't about what you do, it's about who you're with. We don't take our relationships for granted because we know how easily they can change. We're the friends who will remember your birthday, who will check in just because, who will truly listen when you need to vent.

So, to my loved ones, and to anyone out there loving someone with Multiple Sclerosis or any chronic illness: I see you. I appreciate you. Your journey with this illness is valid too. It's okay to grieve the changes and to feel lost sometimes. But know this - the new normal can be beautiful too, in its own way.

This isn't the journey any of us expected. But we're on it together. And together, we've got this.

To all the caregivers, partners, friends, and family members out there - thank you. Your love and support mean more than you know. And hey, how about a movie night on the couch soon? I'll bring the snacks.