Cathy Chester first began her advocacy after being diagnosed with multiple sclerosis herself
The process of being diagnosed with a chronic condition like multiple sclerosis can often be a scary experience for both you and your family. That’s why advocate Cathy Chester, who was first diagnosed with the illness in 1986, hopes to provide more awareness and education around the condition.
MS is a chronic illness involving the central nervous system, affecting the brain, spinal cord and optic nerves. Chester emphasized that people can experience a broad range of symptoms — including milder ones like blurred vision and numbness or more severe ones like paralysis and mobility problems.
“My mission is to help the MS community — to educate and to inspire and to empower them with the information they need,” she said.
Check out more of our conversation with Cathy below.
KCM: What inspired you to become an advocate for MS?
Cathy Chester: After my diagnosis, there was no internet and there were no MS medications back then in 1986. So it was very overwhelming and lonely and scary because I didn’t know who to talk to or where to reach out for help. Our local library had hardly any material and I would have to go to the bookstore or write to some of the MS organizations that were around then, so I would have to get information by snail mail.
So it was very difficult back then, as well as for my family too… I was 28, but I knew right then that I never wanted anybody else to have to go through this when they were diagnosed.
What are some often overlooked warning signs of MS?
All the signs can be overlooked.
There are so many issues that people with MS have — weakness and numbness. Speaking can sometimes become difficult. Sometimes people get optic neuritis where they lose their eyesight. There could be spasticity where your hands and your body or your feet just lock into position and it’s extremely painful. There just could be a loss of sexual intimacy because you can’t feel certain parts of your body like you used to. There are a lot of very odd symptoms of MS, like bending over and your whole body just has a shooting pain for a second, but it’s real and it’s painful.
So some of those could, any of them can be easily overlooked. No one thinks they’re going to get sick and no one thinks they’re going to be affected. It happens to the other guy, but when it does happen, you can certainly be in denial and that’s happened many, many times to people.
What has been the psychological impact of this condition?
I was young and naive and it took me many years to finally that my life was never going to be the same. I can’t run anymore. And as I got older, I can’t walk as far. And, so that — along with other issues that I deal with — affect your mind because you, you set out for the dream.
I thought I would do so many other things in life. Like everybody, we have a plan that we want to do, and we have to reevaluate them and live within our new abilities. When I had my son, that was also a wake-up moment for me… I was younger then, and I didn’t have as many of the issues that I have now, but I still couldn’t always keep up with what the other moms were doing.
I couldn’t run with my son for sure. And you start to feel badly about that.
There’s no shame in seeking counsel from qualified therapists. And the talk therapy really helped with cognitive behavioral therapy and all that. And to see that I am still enough and I’m still a value and I still matter. And so I think that if you face those mental health challenges head-on, you do the best that you can. Well, it works for me. Let me say it doesn’t work for everybody, but it worked for me.
How has the pandemic impacted living with this chronic illness?
We were kind of prepared for it in a lot of ways because we already have to stay home when we’re not feeling well. We already have to be very aware of germs because our immune systems are not strong and we can even catch a cold or somebody’s sniffles.
A lot of the things that society is learning how to do during the lockdown, we were already doing it.
The mental health portion — there shouldn’t be a stigma attached to it. We should be talking more about mental health, and that has affected a lot of people in the community, including myself… not only are we afraid to go out because not everybody is following the protocol, but even after being vaccinated, we still might have a hard time knowing when the right time is to go out. Are other people, following the protocols, or aren’t they? Are we going to catch whatever variants might be floating around?
The best we can do is look to and Dr. Fauci and the CDC and I follow those protocols, but I think overall the mental portion has definitely affected us.
Lastly, what are some ways to support the MS community, especially during the pandemic?
There are a lot of things to do, first of all, to understand and believe what the person is saying when they say they’re not feeling well, when they say they have some portion of their illness that you don’t see, to believe what they’re saying and to understand what their life is like. And to walk around in their shoes before you give an opinion or ask a question that might be hurtful.
It’s also very important to educate yourself on what that illness is, whether it’s MS or any other chronic illness. Information is so powerful and to reach out and find credible sources that will give you the information you need. I know for my family and my loved ones, my friends — they’ve done this, they’ve done their homework.
This interview has been edited and condensed for length and clarity.
