I still remember the day I got my diagnosis. It felt like someone knocked the wind outta me. The doctor said, “You have Multiple Sclerosis.” I just stared blankly, thinking, “What even is that?” I’d heard the term before, but honestly, I thought it was some rare disease that happened to other people, not me. I mean, I was always active, loved hiking, and rarely got sick. So, hearing those words? Total shock.

If you’re reading this because you or someone you care about just got diagnosed, trust me, I get it. The fear, the confusion, the endless Googling (I did it too, don’t worry). I probably spent hours that first week searching for “gejala MS,” “cara hidup dengan MS,” and “apakah MS bisa sembuh?” Spoiler: There’s no cure yet, but it’s not the end of the world, even though it might feel like it.

I wish someone had told me back then that it’s okay to panic for a bit. Seriously. Let yourself freak out, cry, yell, whatever. Just don’t stay there forever. The sooner you accept it, the sooner you can start living again. That’s what I learned, anyway.

The Early Days: Frustration, Fatigue, and Faking It

Man, those first few months were rough. Fatigue hit me like a freight train. I’d wake up exhausted, even after sleeping for ten hours. My legs felt like jelly, and sometimes my hands would tingle or go numb. I tried to act normal at work, but inside I was screaming.

One time, I almost dropped my coffee mug in a meeting because my hand just… stopped working. Super embarrassing. I laughed it off, but inside I was terrified. Was this my new normal?

I started tracking my symptoms in a notebook—stuff like “kesemutan tangan kanan,” “lelah banget setelah jalan kaki 10 menit,” and “mata buram.” If you haven’t started a symptom diary, do it. It helps you see patterns and gives your neurologist way more info to work with.

For the first time ever, I had to say “no” to invitations. Friends would ask me to go hiking, and I’d make up excuses. I just didn’t want them to see me struggle. Looking back, I wish I’d been honest sooner. People are usually more understanding than you expect.

Finding the Right Doctor: Not All Neurologists Are Created Equal

Let me be real: finding a good neurologist in Indonesia isn’t always easy. The first one I saw barely explained anything. He just handed me a prescription and told me to come back in six months. I left feeling more confused than before.

After some research (and a few recommendations from an online MS support group—seriously, join one!), I found a doctor who actually listened. She explained what “relapsing-remitting MS” means, why I needed MRI scans, and how disease-modifying therapies (DMTs) work. She even gave me a list of MS-friendly foods and tips for managing stress. Total game changer.

If you’re not happy with your doctor, don’t be afraid to shop around. This is your health, and you deserve someone who cares. Ask questions like, “Apa efek samping obat ini?” or “Bagaimana cara mengurangi risiko serangan MS?” If your doctor seems annoyed, well, that’s a red flag.

Treatment Trials: The Good, The Bad, and The Annoying

Starting treatment was another big hurdle. My doctor put me on interferon injections. The first time I had to inject myself, I was petrified. I watched YouTube tutorials, read the instruction leaflet three times, and still messed it up. My hand was shaking so bad, I almost stabbed the cat (kidding, but barely).

Side effects? Oh man. Fever, chills, muscle aches—the whole package. For a while, I wondered if the treatment was worse than the disease. But after a couple of months, my body adjusted. The relapses slowed down, and I felt a bit more like myself.

Here’s a tip: keep a “side effect survival kit.” Mine has Panadol, a heating pad, ginger tea, and a playlist of my favorite songs. When the side effects hit, I just curl up, sip my tea, and blast some old-school dangdut. It doesn’t fix everything, but it helps.

Some people do great on oral meds, others need infusions. There’s no one-size-fits-all, so don’t compare yourself to others. I tried switching meds once because I heard someone else had better luck, but it didn’t work for me. Lesson learned: trust your body, and don’t be afraid to speak up if something feels off.

Everyday Hacks: Making Life with MS Work

Living with MS means getting creative. I’ve learned a ton of little tricks to make daily life easier. For example, I keep a small fan in my bag because heat makes my symptoms worse (“Uhthoff’s phenomenon”—look it up, it’s a real thing). I also use voice-to-text on my phone when my fingers are too numb to type.

Meal prepping has become my best friend. On good days, I cook extra portions and freeze them for the tough days. I also swapped out heavy cleaning chores for lighter ones—no more scrubbing the bathroom floor for hours. Sometimes, I just let things slide. The world won’t end if there’s a little dust.

I also set up reminders on my phone for meds, appointments, and even drinking water. Brain fog is real, guys. I once forgot my own birthday (not kidding). Now, I just let technology do the remembering for me.

And about exercise: I used to think I had to push myself hard, but now I focus on gentle movement. Yoga, stretching, and short walks work better for me. Some days, I do nothing, and that’s okay too. Listen to your body. It’s smarter than you think.

Relationships: The Good, The Bad, and The Awkward

Talking about MS with family and friends was awkward at first. Some people acted like I was made of glass, while others just ignored it completely. My parents kept asking if I’d tried all the herbal remedies they saw on YouTube (I love them, but come on…).

I learned to be clear about what I need. Sometimes I need help, sometimes I just want to vent, and sometimes I want to pretend everything’s normal. It took a while, but now my circle gets it. My best friend even learned how to give me injections when my hands were too shaky. That’s real friendship.

Dating with MS? Whew, that’s a whole other story. I once went on a date and spent the whole evening worrying about whether I’d need help walking to the car. It’s scary to be vulnerable, but I’ve found that honesty is the best policy. If someone runs for the hills after you tell them, they’re not worth your time anyway.

Work Life: Adapting and Advocating

I used to be a total workaholic. After my diagnosis, I worried that I’d have to quit my job. But with a few adjustments, I’ve managed to keep working (most days, at least). I told my boss about my MS, and to my surprise, she was super supportive. We worked out a flexible schedule, and I got an ergonomic chair to help with my back pain.

If you’re struggling at work, don’t be afraid to ask for accommodations. In Indonesia, it’s not always easy to talk about chronic illness at the office, but you’d be surprised how understanding people can be. I also learned to pace myself—no more working late just to prove a point. My health comes first watitoto now.

Remote work has been a lifesaver. On flare-up days, I can work from bed if I need to. I also take short breaks every hour to stretch and rest my eyes. It’s not perfect, but it works for me.

Mental Health: The Rollercoaster Ride

Let’s talk about the emotional side for a sec. MS messes with your head, not just your body. I’ve had days where I felt totally hopeless, like I was just a burden to everyone. Other days, I felt weirdly optimistic, like, “Hey, I’m still here, right?”

Therapy helped me a lot. I found a counselor who understood chronic illness, and it was a game changer. I also joined an online MS support group. Sometimes it’s just nice to talk to people who “get it,” you know?

Journaling is another thing that keeps me sane. I write down my fears, my wins, and even the stuff—like the time I accidentally wore mismatched shoes to a doctor’s appointment (don’t judge me). It helps to laugh at yourself sometimes.

If you’re struggling, please reach out. There’s no shame in needing help. We’re all just doing our best.

Small Victories: Celebrating Progress

MS has taught me to appreciate the little things. There was a time when walking to the warung felt impossible, but now I celebrate every step. I’ve learned to set tiny goals—like cooking dinner, calling a friend, or just getting out of bed on a bad day.

I keep a “victory jar” on my desk. Every time I accomplish something, no matter how small, I write it down and stick it in the jar. On tough days, I read through the notes and remind myself of how far I’ve come. It sounds cheesy, but it works.

Lessons Learned: What I Wish I Knew

If I could go back and give myself advice, here’s what I’d say:

• Don’t compare your journey to anyone else’s. MS is different for everyone.
• Ask for help when you need it. You’re not weak, you’re human.
• Take things one day at a time. Some days will suck. Others will surprise you.
• Find your GROUP—whether it’s family, friends, or an online group.
• Celebrate every win, no matter how small.

And above all, don’t lose hope. Life with MS isn’t easy, but it’s still life. There are still good days, laughter, and moments of joy. You just have to look for them.

Final Thoughts: You’re Not Alone

If you’ve made it this far, thanks for sticking with me. I hope my story helps you feel a little less alone. MS is tough, but you’re tougher. And hey, if you ever need to vent or swap tips, drop a comment. We’re all in this together.

Stay strong, teman-teman. And don’t forget—sometimes, the best thing you can do is just keep going.