How Advocating for Myself Helped Me Get My Spark Back
Just recently, I was having drinks with a friend, and somewhere between one topic and the next, she told me she feels like I've finally got my spark back. It's the kind of comment that sends me down a rabbit hole. And it got me thinking about everything that had to happen for me to be sitting there with her, talking about finally being in a good place again.
Let's go back to the beginning. It was 2020, and I had just been called into the neurologist's office to officially receive my diagnosis. Between what I remember as a word-vomit of neurological terminology, he assured me that I was young, that I could be treated, and that I would go on to live my life at up to 95% of what it was before. I could only nod nervously as I listened to his recommendations. Between "make sure to get an MRI every year" and "come back every three months to see me," he also listed quite a few therapy options.
While he was careful to explain each one, my approach was simple: I didn't want a therapy that involved regular trips to the doctor or needles. I wanted something quick and simple. Something that wouldn't get in the way of work and life. Something discreet. Nothing with side effects. Nothing too experimental. Nothing that hurt. So I chose the one that seemed to fit my lifestyle best.
Little did I know that the MS therapy you choose (or are given, as is the case for many) has a strong impact on your daily life and how you deal with your symptoms. And not just because of how it impacts your body, but because of how it affects your brain, your mental health, and your sense of self.
It took me years to realize the therapy I'd chosen wasn't the right one for me. But my neurologist's advice was clear: as long as I wasn't having relapses, there was no reason to change.
So for the first four years of living with Multiple Sclerosis, I learned to live with heat flushes, weight gain, and constant stomach cramps.
I wish I could say that was enough for me to speak up.
It wasn't.
It took a lot of self-education, plenty of conversations, and eventually real self-advocacy before I accepted that "good enough" wasn't actually good enough for me. I'll spare you the details because everyone's limits are different, and I don't want to plant ideas where they don't belong. But for a while, things got bad enough that I even considered stopping medication altogether.
So when I was finally told it was time to make a change, I felt equal parts relieved and terrified.
This time, I wanted to make an informed decision.
I walked into my neurologist's office with a notebook and pen, ready to write everything down. I had pages of questions: How long has this therapy been used for MS?What are the side effects? How does it actually work? How should I prepare for appointments? What should I expect over the next year?
Sometimes I felt a little silly. I wondered whether I was asking too many questions.
But this time, I met a neurologist who patiently answered every single one.
When I later told a friend that my new treatment would involve infusions every six months, she saw the panic on my face. Instead of focusing on the hospital visits, she encouraged me to think about the freedom those six months between appointments would eventually give me.
That small shift in perspective stayed with me.
So off I went.
The next year became a cycle of medical appointments, blood tests, scans, hospital visits, infusions, and endless check-ups. Changing my medication ended up taking almost a full year.
That year, I promised myself I'd dedicate the time it needed, that I'd go through it all quietly, and let every emotion simply be. And so I did. I took some time off, just for myself. I turned to art, to painting, to writing, and carefully following up with every requirement.
Fast forward to 2026. After a long year of going in and out of the neurologist's office, getting poked by infusions, jabs, and whatever else it took to change my MS therapy, I've finally reached a point where Multiple Sclerosis and I can coexist. Getting here was a long battle, and one that only a few people got to see.
I have been symptom free for a year now.
If I could tell my 2020 self anything, it would be this:
Follow your instinct. You did well choosing the therapy that fit your lifestyle, and you did even better by speaking up about the side effects and admitting when it wasn't working for you, whatever "not working" means to you.
Not every therapy is the right therapy. As a patient, I'll probably always be drawn to the option that seems easiest. But as a patient advocate, I'd tell anyone living with Multiple Sclerosis to get informed about all their options, and to talk with their doctor and neurologist about what's right for them, not just what's easiest.
Keep advocating. Every healthcare system is different, but one thing holds true everywhere: neurologists follow a protocol shaped by their region, and their aim is to get you onto a therapy quickly. Yours, as a patient, should be to choose what will keep you going for the long term.
Remember that everybody lives with Multiple Sclerosis differently. What works for me might not work for you, or for the next person. And that’s ok.
The way I see it, this is where our relationship with our specialists really matters. People living with MS should work together with their neurologist to build an action plan and weigh different options and approaches.
And while I've finally reached a place where I get to be myself again, it isn't only thanks to my medication. It's the work I put in: finding the right treatment, speaking up about my needs to my neurologist, and knocking on every door until I got the care I deserve.
She's right, by the way, my friend who told me I've got my spark back. Or maybe it was just buried under the pile of hidden weight that comes with Multiple Sclerosis. But when the person who watched me go through all of it looked at me over those drinks and said she thought I'd finally got my spark back... I believed her.
And we raised our glasses to that.