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.
I’d been seeing different doctors, starting with my GP and gynecologist, but the general sentiment was “You’re young; I’m sure it’ll pass.” Even then, I could tell that something wasn’t right. It would come and go, and there were weeks at a time when I felt fine, but it would always come back.
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.
When I got there, he had gotten my MRI and told me he thought I had MS (as it turns, the optic neuritis is a classic symptom). Fortunately, the head of MS for Weill Cornell, Brian Apatoff, M.D., was doing research on the same floor and agreed to see me, even though my MRI was not classic for MS (to be diagnosed with MS, you have to have at least two scars on your spinal cord). My second scar was very faint, but I did have a cluster of corresponding symptoms. So we began treatment.
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.
Since I was having trouble with my balance, he suggested that I try yoga. And because a lot of MS patients struggle with vitamin D levels, he upped my dosage of vitamin D and took a holistic view of my health. We also looked at different foods that cause inflammation and adjusted my diet accordingly.
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.
A lot of how I can manage is because the folks around me know that I will speak up when I need it.
The impact of MS on my mental health.
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.
All of those things go into helping me keep it in perspective and feel empowered not having to carry it as a secret. Because when you carry something as a secret, you’re telling yourself you should be ashamed of it.
What people should know about MS.
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. While there are people that do experience truly debilitating pieces, as with many illnesses that are invisible, on any given day you don’t know what’s going on for somebody—and that’s true of everything. The main thing is don’t make assumptions about it.
My advice for people with MS.
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.
Reframe those things for yourself, because taking care of yourself doesn’t mean you’re selfish. Look at the things you need to do to keep yourself healthy as giving you freedom rather than taking something away from you. And look around your support system and the people in your life because they often don’t know what to do or how to help—but you can just tell them.
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