Maybe I'm a Fraud… Or Maybe I'm Just Living with MS

I have not posted here in a long time. I hope to share more moving forward, but sometimes life gets in the way.

Sometimes, I feel like a bit of a fraud.

I was diagnosed with multiple sclerosis at 57. By the time they found it, I already had 15 lesions in my brain, along with many lesions in my neck and spine. I was told by three neurologists that my MRI was "prognostically concerning"—statistically linked to a more active, aggressive form of MS if left untreated.

People who know ask me all the time, "How are you doing?"

Without thinking, I always answer, "I'm fine."

Recently, I started Low Dose Naltrexone (LDN), and I honestly think it's helping. (I’m not a doctor, of course, but if you have MS, it might be worth asking your neurologist about at your next visit).

But the truth is more complicated.

Some days are good. Some are really hard. For me, MS is a constant tug-of-war. Just yesterday, I had one of my worst MS days in years. Everything hurt. My body felt stiff. My energy was gone. The "hug" around my right side never really lets up. My feet still feel like I'm walking on a combination of swollen sponges, needles, and hot coals. Most mornings I wake up tired because I didn't sleep well.

So why do I keep saying I'm okay?

Because I'm trying to remind myself that MS doesn't get to decide who I am today. Every morning, I get up and try again.

I take my Ocrevus. I take my vitamin D, B vitamins, acetyl-L-carnitine, alpha-lipoic acid, and lion's mane. I work out at least four days a week. I lift weights. I run on the treadmill, holding the rails when I need to.

Recently, I even started sprinting across the gym. My warm-up is walking forward, backward, and side-to-side. The first time I did it, I was convinced I was going to fall flat on my face. I didn't.

Now I do it every workout. Maybe it strengthens my legs. Maybe it strengthens my confidence. Either way, it's helping. Every morning, I work on my balance. I do my exercises. I keep searching for ways to stay one step ahead of this disease.

MS has changed me.

I have a hitch in my walk now. Most people probably don't notice, but I do, and I'm very self-conscious about it. At 62, I’ve worked hard to stay in athletic shape, dodging the typical "dad bod." Because MS is an invisible disease, people look at me and assume I’m perfectly healthy. They don't see the silent neurological battle unfolding beneath the surface. When I stumble, people who don't know me might think I had a few drinks before my workout.

You never think you'll have to think about walking... until you have to think about walking.

My eyesight has changed, too. Sometimes friends wave at me from across a room, and I don't realize it's them until they're only a few feet away. I laugh it off and blame it on my age, even though I know it’s the MS.

I don't tell everyone I have MS. Not because I'm embarrassed or ashamed. I just don't think every conversation needs to start with my diagnosis. MS is something I live with. It isn't all that I am.

Over the years, I've realized something important: There is a difference between privacy and denial.

Saying "I'm okay" isn't pretending I don't have MS. It's refusing to let MS become my entire identity.

I'm not ignoring the disease; I'm fighting it every single day. I'm taking my medications. I'm exercising. I'm adapting. I'm learning. I'm getting back up when I get knocked down.

Some days I win. All days I try. Fork you, MS!

If you're reading this and living with MS, I hope you know this:

• You don't have to be positive every minute.

• You don't have to tell everyone how much you're hurting.

• You don't have to prove how strong you are.

But don't ever confuse having a hard day with having a hopeless life.

You are still you. MS may change how you walk, see, sleep, and much more. New symptoms will try to rewrite your story. But it doesn't get to decide your character.

For a long time, I thought telling myself "I'm okay" made me a fraud. Now I know better.

Hope isn't pretending everything is fine.

Hope is waking up every morning, knowing the challenges are still there, and deciding you're going to live your life anyway.

And maybe that's not being a fraud at all.

Maybe that's just courage.

Best to all living with MS.