By Carolyn Deming Glaviano, as told to Alexandra Benisek
I was diagnosed with multiple sclerosis on my birthday. I had some eye pain and went to my optometrist, who then told me I needed to see my ophthalmologist. After being in the eye doctor room for a few hours, and seeing many doctors, a resident told me they think I have MS. She suggested I walk to the emergency department and admit myself into the hospital for an MRI.
There was a moment when I was in shock. I kept thinking “no, really, I’m just here for eye pain.” I called my colleague, Cassie, to tell her the situation. She ended up bringing saltines, ginger ale, and almonds and stayed with me while I was admitted into the hospital. That day, she catapulted to this different status of friend, just by being such a wonderful person.
How MS Affected My Friendships
One of the things every individual with a chronic illness needs is another person to hear, to listen, and to discuss things with. My friend and roommate, Sarah, was with me at appointments, not only to be my advocate, but to hold witness to what was being said. Doctors usually want people to leave during a spinal tap, but Sarah didn’t leave. She held my hand and petted my hair during the procedure.
Through my diagnosis, I’ve learned what I need from my friends. For example, Cassie was not going to let me be alone at the hospital. It was a professional friendship prior to that. But we crossed over about 100 barriers that day, because I didn’t want to be alone and she rose to the occasion.
My other long-distance friend is very good with medical things and wanted updates. So, Sarah became a central point of focus for people in my life so that I didn’t have to update them. She connected everyone and answered questions.
But that’s just one side — the diagnosis and support side. Then there’s the physical limitations. As my disability has progressed, I’ve had changes in my walking, stamina, balance, and even my fatigue levels. Fatigue is so debilitating, and sometimes I have bad movement days, so I might have to cancel plans. Until you or someone close to you encounters this, you don’t realize how hard it is to get around.
My friends never make a big deal when I have to cancel plans. They don’t take it personally or make me feel bad. Because I’m already disappointed — I wanted to see them. It’s not me being flaky. It’s me having to make a physical determination of what I am capable of, and a cost-benefit analysis of what I need to do today, what I need to do tomorrow, and what I need to do for the rest of my week.
How MS Affected Me and My Family
I have an incredible family. But at first, I worried how my parents were handling it. The parent-child relationship did a massive swap. I thought I was going to be taking care of my parents as they got older, but that hasn’t happened. They’re still very much taking care of me.
I had to work a lot on communication. At first, I didn’t know how to convey the ways in which I needed my mom to help me. I wanted her to be a mind reader. She also didn’t know how to take hard information and know what to say right away. I wanted her to have an instantaneous and perfect reaction, but she needed time to think.
Now, we’re in a really great space. But that’s taken time. It’s so important to be open with communication. We had to come together to figure that out.
Even though my family is super supportive, I’ve still had to say, “please don’t say that to me,” or “this is how I need you to help me,” or ”can we do x instead of y?” That takes energy, effort, and is a learning curve.
How MS Affected My Marriage
My boyfriend, now husband, and I started dating long-distance. When I was diagnosed, we hadn’t been together that long. He was supposed to be in a wedding when I went into the hospital. He called up his buddy and said, “I can’t be there.” He changed his flight and came from Atlanta to Chicago to be with me.
He friended all of my friends on Facebook and did a “birthday redo,” since I had been diagnosed on my birthday. They bought alcohol and food and did a whole birthday do-over several days after I got out of the hospital. He was never scared of my diagnosis. I don’t know how I got so lucky. Because I know a lot of people would run the other direction, not knowing what the future would bring.
Today, I have mobility issues and we have many stories in our house. So, he’ll carry my glass of water, my book, and my phone so I can concentrate on getting up the stairs. I can’t walk our dog anymore, so he takes care of that.
We have had to shift what and how we do things. Now, we do a lot of check-ins. On some bad days, I’ve had to ask, “do you want to hear this?” or “are you in a headspace to hear this? If not, that’s OK.” I don’t feel like he’d be turning his back on me. Because his mental health and ability to support me also have to be OK.
I think this idea that your spouse is supposed to be everything puts too much the pressure on them, it’s unfair. On certain days, I have another person help, like a friend.
Talking to Others About MS
During previous jobs, I was not loud and proud about MS. I felt unsure if I wanted to acknowledge that I have, what is now considered, a disability. I know that people are not unbiased, so I was terrified to even self-identify.
In many cases, if you look fine, there’s also a stigma. Prior to my physical limitations, I had an invisible illness. I would wonder if I had to try to look sicker than I am to prove that I have MS. That’s a burden, especially in the workplace. So, I swung the other way. I’d act like everything was fine. My professional life and persona are very important to me, so my energy went to that. And then my recovery was on the weekend. But I realized it wasn’t fair that my job got all the good energy.
It’s a lot of therapy and a lot of talking to bosses. At every new job, my boss eventually knew about my MS. But it wasn’t off the bat. It was several months into that job that I told them.
When I talk about MS with others, I love using the phrase “dynamic disability.” I will communicate when it’s a good energy day or when it’s a bad mobility day. At my current job, I have a really understanding leadership team. If they’re going to have an in-person meeting, they give me the choice to come in or not. And that’s awesome.
But in past jobs, I’ve had some issues, like getting proper disability parking. There are mechanisms to help people with MS, but it’s not a seamless process, it’s not always easy to understand. But there are things you can do.
My distinct sound bite is, “If you don’t ask, you don’t get.” What’s the worst thing that can happen if someone says no? You still have the self-assurance of knowing that you advocated for yourself. That means your energy, your boundaries, your work-life balance, your health, your doctor, and the people in your life — those are choices that you have.
There are some magical people in this world who never need to be told how to help, but most people just want some direction. The support you get from work won’t be the same support from your family, or from your friends. But most people have the ability to offer something.