Let's take the symptoms out of the equation for a moment...
And think about our emotional health. Our mindfulness. Our psychological quality of life. What do you do when you're down and out? Or have an embarrassing experience in public? Or a disappointing moment? How do you overcome? We're all warriors in this community, young and old. Diagnosed for years, newly diagnosed, or still looking for answers.
I know the symptoms are awful, the things that everyone goes through daily with a glitchy nervous system can be exhausting. But so many of you amazing people still have so much positivity in your mindset, and it's beautiful. So let's talk about it.
I'll start with an experience I had today at work. A previous colleague returned to our company, and when he left we were friends and I was only experiencing some symptoms, not sharing with people around me, and not looking for answers. He sees me today with my trusty cane and I have to decide what to do. What path do I take? How much am I willing to share with this friend who doesn't know?
I still don't know what I'm going to eventually say, just said today that my legs were wonky and then asked about his puppy.
I'm okay with my truth, I've accepted that it's not going away even as I continue on the search for answers. But my truth tends to cause some feelings in people who care about me, and I don't want that. I want for them to still have the happy positive energy that I love them for. It's a constant navigation, and taking into account individual personalities. I try to always stay true to myself, acknowledge my emotions and actions, but still respect the individuals around me and continue to be a positive light for them.
I would love to hear stories, both of success and not so successful. Stories of internal thoughts to reframe or redirect. Stories of recognizing that you are a warrior. All of it.
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, what a great topic. You make me think of how I work so hard to protect others and myself from being 'that person with MS' when I just want to be another person in the room. I don't have specific stories to share but rather just a general approach. But I do have to say I have been totally honest with everyone about my diagnosis, which leads to interesting conversations. best, Laura, DX '08 I wonder if it would help if you were proactive when you see these people and just tell them you have no new answers and then change the conversation to what you might want to talk about? People was trying to be kind and empathetic, but honestly they can also just be annoying. I have a friend who always asks 'how are you doing?' in such a tone I want to turn and walk away. She can see with her own eyes how I am . Maybe you have some extra grace you can share my way? LOL , Laura you know, I've tried a few different approaches. It's hard because I know they care. And they're my Mama bears because for the folks I'm thinking of, I'm close in age to their own children. I've done the redirection (proactively and responsively), distraction with gifts (fun toys or candy that I have always been prone to hand out to anyone around as an expression of gratitude for that person), and direct conversation that I initiate where I address their advances and how it affects me. So far... some but not much success.
And I get it. They care about me. What do I do when someone I care about struggles? I check in. I want to help. I want to do everything I can for them. And they're just doing their own version of that with me.
Let's not misunderstand... I get so annoyed with people checking in on me. I really have to take a moment and bite my tongue. I'm so fiercely independent by nature that even the cashier asking how my day has been raises ire in my soul because that's MY business. And so trying to navigate with grace the people who genuinely care is a necessary struggle.
So one of the tools I've implemented is safe phrases. I've explained to these beautiful people around me that when I say my safe phrase they need to just back off and either choose a neutral topic or walk away. And this tends to work pretty well...as long as my mind causes my brain to utter it. At work, it's "how about them Bears" meaning the sports team. That enables me to pause and not get irritated or lash out, and gives them the cue to redirect.
I'm wishing you extra grace 💜💜
