How MS Turned My Life Upside Down

The Impact of Multiple Sclerosis on My Personal Relationships

MS and Relationships The Struggle is Real

By Carolyn Deming Glaviano, as told to Alexandra Benisek

Imagine going to your optometrist for some eye pain and walking out with a life-altering diagnosis. That’s exactly what happened to me on my birthday. I was told by a resident that they suspected I had multiple sclerosis (MS) and needed to go to the hospital for an MRI. Talk about a birthday surprise!

At first, I was in shock. I mean, come on, I was just there for eye pain! I called my colleague Cassie, who instantly transformed into a superhero friend. She brought me saltines, ginger ale, and almonds, and stayed with me during the hospital admission. It was in that moment that Cassie soared to a whole new level of friendship.

The Roller Coaster of Friendships

When you have a chronic illness like MS, you quickly realize the importance of having someone to listen, discuss, and just be there for you. My friend and roommate, Sarah, stepped up to the plate. She accompanied me to appointments and became the person who witnessed everything that was said. She even held my hand and comforted me during a spinal tap, defying the doctor’s orders to leave the room.

Through my diagnosis, I’ve learned what I truly need from my friends. Take Cassie, for example. She went beyond the call of duty when she refused to let me be alone at the hospital. Our relationship instantly transcended the boundaries of professionalism, and she proved to be a true friend in my time of need. And then there’s Sarah, my long-distance friend, who became the central point of contact for everyone in my life, sparing me the burden of constant updates and questions.

But it’s not just about emotional support and understanding. MS brings with it physical limitations like changes in walking, balance, stamina, and crippling fatigue. Some days, I have to cancel plans because my body simply won’t cooperate. Thankfully, my friends never make a fuss about it. They understand that it’s not me being flaky, but rather a difficult decision I have to make based on my capabilities and energy levels.

When MS Meets Family

You often hear about the parent-child role reversal as parents age, but in my case, it happened far earlier than expected. I was initially worried about how my parents would handle my diagnosis. However, they surprised me with their unwavering support. Instead of me taking care of them, they stepped up and took care of me.

Of course, it wasn’t all smooth sailing. Like any relationship, communication played a crucial role. At first, I wanted my mom to be a mind reader, to instantly know how I needed her help. And she struggled to find the right words to say in response to the hard truths of my illness. But over time, we worked it out and found our groove. Open communication became our lifeline, and we learned to navigate this new terrain together.

Even with the most supportive family, there are times when I have to assert my needs. I’ve had to say, “Please don’t say that to me,” or “This is how I need you to help me.” It takes effort and energy, but it’s a necessary learning curve for everyone involved.

Love in the Time of MS

When my boyfriend, now husband, and I started dating long-distance, little did we know what life had in store for us. Just as our relationship was beginning to bloom, I was hit with the MS bombshell. But instead of running for the hills, he stood by me, showing unwavering support and love.

He went above and beyond to make me feel special, organizing a “birthday redo” with our friends after I got out of the hospital. He carries my water, book, and phone up the stairs so I can focus on navigating my mobility issues. Walking the dog? That’s now his responsibility. We’ve had to adjust our lives and find new ways of doing things, but through it all, he’s been my rock.

We’ve also become experts at checking in with each other. On my bad days, I ask if he’s in the right headspace to listen, giving him the freedom to prioritize his own mental health. I know that expecting him to be everything to me is unfair, so we’ve learned to lean on friends and share the load when needed.

Tackling the MS Conversation

When it came to discussing my MS, I initially hesitated to share it with others. The fear of judgment and stigma held me back. Besides, with an “invisible” illness, looking fine on the outside often resulted in people doubting the severity of my condition. Do I have to act sicker just to prove that I have MS? It’s a heavy burden to bear, especially in the workplace.

But you know what? I decided I wasn’t going to let that stop me. I started being more open about my MS, using a phrase I like to call the “dynamic disability.” I communicate whether it’s a good energy day or a day when my mobility is limited. And you know what? My current job has an incredible leadership team who truly understand. They give me the choice to work remotely or come into the office for meetings. That level of support is simply awesome.

Sure, not every job has been as smooth sailing. I’ve faced challenges like getting proper disability parking and navigating the complexities of workplace accommodations. But here’s what I’ve learned: if you don’t ask, you don’t get. Advocating for yourself is crucial. And most people are willing to offer support if you just give them the guidance they need.

Remember, the support you receive from work might not be the same as what you get from family or friends. But everyone has something to offer. So, don’t hesitate to speak up and let others know how they can help. You have the power to shape your own choices, boundaries, work-life balance, and ultimately, your overall well-being.

Join the Conversation

Have you or a loved one experienced life with MS? Share your stories and insights in the comments below. Let’s support and empower each other every step of the way!