How MS Helped Me Find My Purpose

I was determined not to let a scary diagnosis cause me to spiral down into depression.

I was diagnosed with multiple sclerosis (MS) in 2019. I come from a family with a long line of complicated health conditions. Pretty much everyone in my family has autoimmune conditions. And now that I know what I know about MS, I have been seeing symptoms since I was 15 years old.

When I was diagnosed, I was working as an administrative assistant at a mortgage bank, but it wasn’t what was giving me purpose, and I had already stepped back from my music career because I didn’t like the direction the music industry was going in. I kept telling my husband that I felt God was calling me to do something more, though, at the time, I had no idea what. My diagnosis was kind of an eye-opener, beginning with, “Woah, why me? This sucks.” But it soon transformed into, “But how can I turn this into something positive?”

I had gone online seeking some answers and support — and even joined a couple of Facebook MS support groups — they were all negative. It wasn’t helping. So, I started my blog, and then I started my Instagram. I am an elder millennial, born in 1988, so I didn’t know what a hashtag was or what tagging was. I had zero clue what I was doing 3 years ago. But I knew I needed to find support from people who understood the disease.

I had struggled with depression in the past, big time, with my first marriage. I told myself, “I know what depression smells like, I know what it tastes like, I know how it moves, I know that I’m fully capable of letting this screw me if I allow it to.” That’s how A Hot MS was born.

What depression looked like for me

During my first marriage, I was married to an extremely abusive individual — physically, emotionally, and mentally. He struggled with addiction. I knew nothing about addiction. I knew nothing about alcoholism.

But once I was deep into that marriage, my quality of life was spiraling down the toilet. I called my mother and freaked out, saying, “I can’t figure out how to clean myself.” I was so mentally gone, I couldn’t even figure out how to brush my teeth.

When I was diagnosed with MS, I realized that I could easily go back there, but I didn’t want to. It was an eye-opener of not allowing myself to go down that dark rabbit hole.

That’s not something I struggle with on a daily basis now. I struggle with major anxiety but not depression. I think it’s a constant mental reminder that you have to set limits with your own mind and boundaries with what you allow yourself to touch upon emotionally in processing things. I try to approach things from an alternative perspective of optimism and finding the glass half full, but everyone is going to have days when it’s like, “Screw this, screw you, and screw everything,” and that’s normal. You have to accept those days and not kick yourself in the butt if you have a day like that.

Widening the lens of perception

There is a huge misconception among the younger generation about invisible illnesses. I usually use a walker, though some days, I use a cane, and some days, I use my wheelchair — and people just don’t get it. They say, “She was fine just last week.” Random strangers come up and say, “Why do you need that? What happened?”

At first, I was irritated. But then, I realized that wasn’t helping anyone. So, I just started educating people. I would be like, “Have you ever heard of multiple sclerosis?” If you ask about my condition, I’m going to share.

My whole purpose now is to widen the lens of perception. It’s hard to have an invisible illness and pull up with your blue handicap parking placard and have people accuse you of taking the parking spot from people who really need it. We’re finally seeing changes a little bit with accessibility, but it needs to keep going in that direction because I still don’t think it’s enough of it.

We live in a world that is primarily inaccessible as far as disability goes. The world doesn’t get it. You can stay negative about it, or you can get creative and educate people and try to widen that lens of perception. It’s a choice of how you approach things.

Learning to adapt with chronic illness

I think talking publicly about my physical and mental health came more easily for me than many others because of my performance background. I don’t do shows in New York anymore, but I’m able to use the tools and skills I learned from having that background and make them applicable to what I do now.

I love getting messages like, “I wish I could be that communicative with my spouse when it comes to sexual dysfunction and MS,” or “I wish I could be that confident with my mobility aids” because I view them as an opportunity to boost others. You are capable of it, and you do have that ability — so whoever is telling you that you don’t, you need to get them out of your life — or at least give them a smaller voice.

The most valuable tool that anybody with any sort of chronic illness or progressive disease can have is the ability to adapt. You have to get comfortable with being uncomfortable. I like to control things. I like to have a plan for a plan, for a plan. But with MS and other chronic illnesses, you can’t because things are going to change constantly. The quicker you can get better at adapting to the chaos, the smoother you’re going to be able to transition through stuff.

Giving yourself grace

I have viewed my MS diagnosis as a blessing. I’ve found purpose in it. It has taught me a lot. If I had the opportunity for somebody to say, “We’re going to take MS away, and you’re not going to have it anymore,” I would not. It has humbled me. It has taught me a lot about myself in listening to myself and my body, not wearing that imaginary hero cape.

Before my diagnosis, I would wear my cape, and I would save everybody. It’s like the curse of being an empath. Since then, I’ve learned a lot about balancing my needs with those of others and giving myself grace. Definitely grace.