Story of my multiple sclerosis journey

Penelope was 46 when she received the diagnosis that would change her life: multiple sclerosis. There were symptoms that started just days earlier of tingling in her fingers and parts of her face along with a frightening episode where her vision blurred for days. As a graphic designer and web developer who thrived on precision and creativity, she was devastated. She couldn’t imagine how she’d navigate a future with a disease known for its unpredictability. But as the years unfolded, her story became one of courage, adaptation, and an unyielding spirit.

After a few years had passed, she noticed a subtle but painful shift in her life. Muscle weakness crept into her hands, making it harder to sketch the intricate designs she once crafted effortlessly. Her legs grew unreliable, forcing her to use a cane on bad days. Cognitive decline brought frustrating “foggy” moments — forgetting names or losing her train of thought mid-sentence. Bladder issues added another layer of challenge, often leaving her anxious about leaving the house. Yet Penelope refused to let MS define her. “I’m still me,” she’d tell herself, “just with a few extra hurdles.”

On days when her hands trembled too much to hold a coffee mug, she’d laugh it off saying, “Guess it’s a smoothie day!” — turning frustration into a moment of laughter. When walking to the store became too taxing, a walker was her friend which soon turned into an electric wheelchair. She’d zip alongside kids in the neighborhood on bikes racing through the neighborhood, wind in their hair, laughing like nothing could hold her back. Penelope made it a point to be honest with others about her struggles, telling them that strength wasn’t about hiding pain but about facing it head-on.

The cognitive decline was harder to mask. She’d sometimes lose words mid-conversation or forget appointments. Instead of retreating, she embraced tools — phone reminders, sticky notes plastered around her home, even a journal where she scribbled thoughts before they slipped away. She called it her “brain backup plan” and turned it into a blog, sharing tips with others facing similar battles. What started as a personal coping mechanism grew into a small online community, with readers thanking her for making them feel less alone.

Then the most devastating thing happened within her social circle. Friends she’d once counted on, people she’d shared late-night laughs and weekend adventures with, began to drift away. It wasn’t malice or a dramatic falling-out that caused the rift; it was something quieter, more insidious: their inability to adjust to her struggles and her growing need for help.

In the beginning, her friends rallied around her. There were casseroles dropped off after her diagnosis, texts checking in, and promises of “we’ll get through this together.” But as MS dug in deeper, the reality of her condition clashed with their expectations. When Penelope could no longer join them for spontaneous hikes or movie nights, she had to replace the time by careful planning around fatigue and accessibility — invitations slowed. “You used to be so fun,” one friend let slip during a rare coffee date, not realizing how the words stung. Penelope wanted to scream that she was still the same person inside, just trapped in a body that wouldn’t cooperate.

The physical changes were hard enough, but the need for help became the real wedge. In a few years simple tasks — like carrying groceries or getting up from a low couch — required assistance. She’d ask a friend to grab something from a high shelf or steady her arm as she navigated a step, and she’d catch the flicker of discomfort in their eyes. Some stopped coming over altogether, citing busy schedules, though Penelope knew it was more than that. One close friend admitted over the phone, “I just don’t know how to handle this — it’s too heavy.” Penelope hung up feeling like a burden, a label she’d never wanted.

She stopped reaching out after that. She understood: her struggles were messy, inconvenient, a stark reminder of vulnerability in a world that prized independence. But understanding didn’t dull the ache of isolation. For a while, Penelope internalized the losses. She’d lie awake, replaying conversations, wondering if she’d asked for too much or if she’d somehow failed them.

Slowly she let go of the guilt and reframed her circle. She sought out new connections — people from her MS community who got it along with a few people from her church who didn’t flinch when she needed a hand. One woman became her rock, someone who’d laugh with over spilled coffee instead of looking away. Penelope also leaned harder into her online community, where her blog about living with MS drew messages from strangers who felt like kindred spirits. “You’re not alone,” they’d write, and she began to believe it.

The old friendships faded into bittersweet memories, but Penelope found peace in the ones that stayed — her one lasting church friend who never wavered and a neighbor who’d drop by just to chat. She mourned the losses, yes, but she also realized they weren’t her failure. MS had changed her life, not her worth. And in the quiet strength of those who stuck around, and the new bonds she forged, Penelope discovered a truth: the right people would adjust to her struggles, not because they had to, but because they wanted to.

Thank you for sticking with me over the years along my journey. For putting up with my bad days, laughing at my sarcastic humor and crazy MS moments, and allowing me the time to be an inspiration for you to hang in there when time get tough. You are my much needed rock. I can’t thank you enough.

To all my online kindred spirits, you are treasures and I will never take your presence in my life for granted even if we never meet in person. Thank you for being who you are!

Penelope Conway