F.U.C.K. | Fighting Unseen Challenges Kindly

Living with multiple sclerosis, invisible struggles, and the exhausting business of being misunderstood

.

Who truly understands the gravity of multiple sclerosis when they’re first diagnosed?

I certainly didn’t.

Nobody hands you a manual explaining how much of your life might change. Nobody prepares you for the possibility that things you once did without thinking might eventually require planning, patience, and an unreasonable amount of energy.

For some, MS moves slowly. For others, it moves aggressively. And for many of us, it is unpredictable enough to make planning tomorrow feel like a negotiation with a body that refuses to commit.

What I’ve learned over the years is that MS doesn’t only challenge your physical abilities. It challenges your relationships, your confidence, your independence, and sometimes even your personality.

And somewhere along the way, people begin questioning how disabled you actually are.

Not always out of cruelty. Sometimes out of genuine confusion. Other times, well, let’s say empathy isn’t everyone’s strongest quality.

The conversations usually sound something like this.

Them: “But you could still wash dishes, right?”

Me: “Sure. Sometimes. If I have the energy.”

Them: “You could cook dinner, though?”

Me: “Absolutely. On a good day.”

Them: “But you could help clean up? Pick things up off the floor?”

Me: “Depends. How badly do we need whatever is on the floor?” Ha-Ha

Them: “Well, you could wash your clothes and fold them away.”

Me: My wife does the clothes, but “Yes. Although there’s a good chance that putting away laundry will take me three business days.”

I laugh a lot because sometimes humor is the only thing standing between me and complete frustration.

But beneath those conversations is something I wish more people understood.

Being able to do something doesn’t mean I’m able to do it every time. And doing it once doesn’t mean I won’t pay for it afterward.

Showering takes energy. Shaving takes energy. Getting dressed, climbing stairs, getting in and out of bed, even standing long enough to accomplish something simple.

All of it requires something from me.

Some mornings, I’ve already exhausted a significant portion of my energy before most people have finished their first cup of coffee.

And stress? Stress deserves its own chapter.

It’s exhausting trying to manage a disease while also managing everyone’s expectations of how you should behave with it.

The Part You Don’t See

My physical limitations are the easiest part of my MS for others to recognize.

You see the wheelchair. You notice the difficulty walking. You understand why stairs present a problem.

Those things are visible.

But my physical appearance tells only half the story.

What you don’t see is the mental exhaustion.

The cognitive fog that makes simple thoughts difficult to organize. The moments when words disappear halfway through a sentence. The frustration of knowing exactly what I want to say but struggling to get it out.

Sometimes I lose my train of thought. Sometimes I struggle to concentrate. Sometimes the smallest interruption feels ten times larger than it should.

And sometimes, I am simply not in a good mood.

There. I said it.

Not every difficult moment is a spiritual lesson. Not every bad day ends with gratitude and a beautiful sunset.

Sometimes I’m irritated.

Sometimes I’m impatient.

And I understand some of it.

Sometimes I don’t want to talk, explain myself, answer another question, or reassure someone that I’m okay when I’m clearly having a difficult day.

Some people become more compassionate. They learn. They listen. They adjust their expectations without making you feel like a burden.

And here’s the uncomfortable truth.

I don’t need anyone to understand every symptom I experience. I need them to believe me when I tell them what I’m experiencing.

Sometimes MS affects how I respond to the people I love.

Fatigue, pain, cognitive changes, and emotional stress can influence how a person responds to everyday situations. I recognize those changes in myself.

There are days when I’m aware of my attitude and work hard to manage it.

Other days, I don’t recognize it until much later.

And then comes the guilt.

Because having MS doesn’t give me permission to hurt people’s feelings. It doesn’t excuse every impatient response or every moment of frustration.

But I wish people understood that sometimes what looks like an attitude is actually someone struggling to hold themselves together.

I’m not always angry with you.

Sometimes I’m angry with what is happening to me.

And unfortunately, the two don’t always come out sounding different.

When Understanding Becomes Another Challenge

One of the more painful parts of living with a progressive illness is watching relationships change.

Others struggle.

I’ve watched relationships slowly fade. I’ve noticed people become less patient. I’ve felt the uncomfortable distance that develops when someone doesn’t quite understand the person you’re becoming.

It’s difficult watching someone change.

But imagine being the person experiencing those changes firsthand.

Imagine waking up every morning wondering which version of your body you’re going to get.

Imagine remembering how easily you once moved through the world, while now having to calculate whether a simple activity is worth the physical consequences.

Then imagine having to convince someone that your exhaustion is real.

That you’re not being lazy.

That you’re not exaggerating.

That you’re not using your diagnosis as an excuse to avoid participating in life.

I don’t need anyone to understand every symptom I experience. I need them to believe me when I tell them what I’m experiencing.

There’s a difference.

I’m Still Learning to Live With Me

One of the hardest relationships I’ve had to maintain throughout this journey has been the relationship with myself.

I remember the man who could accomplish a dozen things before lunchtime.

I remember being physically independent. Moving without thinking. Doing things without asking for help or calculating how much energy I had left.

I remember him clearly.

And although I’m still that man in many ways, I have to accept that my circumstances have changed.

My mind still makes plans my body isn’t always willing to participate in.

That’s a difficult reality to accept.

Especially when you’re someone who has spent most of his life being dependable, productive, and available to the people around him.

These days, my list of priorities is shorter than it was last year.

Not because I stopped caring.

Not because I’ve given up.

But because I’ve learned that giving everything to everyone leaves little for myself.

And I no longer have the luxury of pretending my energy is unlimited.

So How Do I Deal With All of This?

One day at a time.

Some days, one hour at a time.

And on particularly difficult days, one breath at a time.

I still work. I still laugh. I still love my family. I still find things worth getting excited about.

I still have dreams, opinions, responsibilities, and a sense of humor that MS hasn’t managed to take away.

But I also have limits.

And those limits deserve respect, including from me.

I’m learning that resting isn’t quitting. Asking for help isn’t weakness. And saying no doesn’t mean I love someone any less.

I’m also learning to take responsibility for the emotional weight I sometimes bring into a room.

Because the people I love deserve compassion too.

MS might explain some of my behavior, but I still have a responsibility to recognize it, apologize when necessary, and communicate what I’m going through.

It’s a difficult balance.

I want people to understand my limitations without feeling as though they must walk on eggshells around me.

I want patience without pity.

Help without judgment.

Understanding without having to constantly defend myself.

And perhaps most importantly, I want to remain myself, even as MS continues changing the circumstances of my life.