“We want to continue doing things.” — Jennifer
Living with Multiple Sclerosis involves more than managing symptoms. There’s also the work people don’t always see.
In this episode of A Couple Takes on MS, we pull back the curtain on the hidden work of living with MS and the reality that, as Jennifer puts it, “Everything takes longer.”
But this isn’t about complaining. It’s about acknowledging what living with MS requires while continuing to participate, adapt, and show up.
In this episode, we talk about:
- Why everything takes longer. Getting ready, getting out the door, and managing the extra steps that come with MS and caregiving.
- The work behind accessible travel. Hotels, airports, transportation, medical equipment, bladder issues, and everything that has to be considered before leaving home.
- The cost of accessibility. From hotel accommodations to renting equipment we need simply to travel.
- Whether “the juice is worth the squeeze.” Some opportunities require a lot of preparation, so we weigh the work against what the experience means to us.
- Accepting help without surrendering independence. Sometimes support means recognizing when someone needs help. Other times, it means giving them room to keep doing what they can.
- The little hacks that make life easier. Untying shoes, opening jars, putting away silverware, and conquering those seemingly innocent resealable freezer bags. 😉
So much of this work remains hidden because we’ve gotten pretty good at doing it. Talking about it can remind us that none of us has to figure everything out alone.
What is some of the hidden work you do to live with MS, disability, or chronic illness? And what tricks or adaptations make it a little easier? Reach out to us at ACoupleTakesOnMS@gmail.com to share your experiences!
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Thank you for listening to A Couple Takes on MS. We’re grateful you’re moving forward with us one step, one roll, and one story at a time.
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