I Was Diagnosed With Multiple Sclerosis In My 20s — Here's How I Took Back Control Of My Life

I was in my early 20s when I began noticing a weird cluster of symptoms. I would suddenly get very tired, like a wave over me in a way that shouldn't have been happening at 24, and I felt tingling in my right hand. I also tripped a lot, which I associated with being tired, but I continued to try to figure out what was going on.

My dad had a family friend who was an internist, who he called and explained my situation to. He agreed to see me, and after I explained what was going on, he helped to set up an appointment with the head of neurology at Weill Cornell.

I got a bunch of tests done and had just gone for an MRI when I woke up one morning with no vision in my right eye—I was totally blind in one eye. I called the neurologist, and after explaining what happened, he told me he believed I had something called optic neuritis, which is a swelling of the optical nerve.

I was 25 when I found out I had this illness—specifically, I was diagnosed with relapsing-remitting MS (categorized by waves of relapse with periods of inactivity that is often diagnosed earlier in life than other forms of MS).

In my head, I thought I was going to be in a wheelchair forever and was left wondering what this meant for me. Thankfully, I've been very fortunate for the past 25 years, and I've had an incredibly mild case. 

Still, the first few years were really hard as I figured out the right treatment with my doctor, and there were times when I needed a cane to walk.

I quickly learned that everyone with MS has personal triggers that can exacerbate symptoms. For some people, the trigger is stress, for others it's other illnesses. For example, I discovered anytime I got a fever, that would trigger worse symptoms. While the first few years were hard, I stabilized, and I was fortunate that my doctor took an approach that was beyond medicine.

Often when you have relapsing-remitting MS, after a period of time you move into a phase of the illness called secondary progressive, where you're not going into full remission anymore.

This is what I'm experiencing now, so I'm very focused on managing my symptoms. I have them more often, and stress is definitely a factor. Over the past few years, I've been more likely to be symptomatic than not.

I work really hard to make sure I get good sleep, and I'm very careful about heat. I think the most important thing is that I ask for help when I need it, and I'm direct with people. Feeling comfortable with my support system to be direct and honest about what I need is also incredibly important.

I have great friends, and once we were going for a long walk and I had recently been having trouble walking. As we were walking along, one of them kept asking "Is it too far?" or "Do you want to stop?"

But I had this wonderful friend who said, "Or we could just stop asking you and recognize that you're an adult and you're going to ask for help when you need it." And that was very empowering. 

MS is a big part of my life, but when I think about all the descriptors that make up who I am, it may be on the list, but it's not a defining part of me.

The diagnosis helped me think of things in three buckets when I have a problem. The first one is what's within my control. The second is what's within the control of somebody who I can ask for help from, and the third is what is out of my control.

Having MS is out of my control, but how I prioritize my health is within my control. That's helped me come to grips with this illness, and I recognize how fortunate I am that it's been so mild and I have access to great health care. 

Not everybody's course with MS is the same. It is an illness that can largely be managed, and from an employment standpoint I want people to know that it doesn't affect your ability to be an incredible performer.

I also want people to know that you can live a full and incredible life in every aspect. When you have MS, it doesn't hold you back.

Asking for help doesn't mean you're weak. In fact, it actually means you're strong. If there are things that you need to do to feel empowered, do them. I struggled with having to walk with a cane in my 20s, but now I see that cane as giving me a level of freedom when I need it.