From Isolation to Beyond the Invisible Diagnosis: A Story of Loss, Resilience, and Finding “My Person”

Isolation driven by the fear of the unknown.

In October 2021, during National Disability Employment Awareness Month, I was invited to write about my experience with Multiple Sclerosis for Bank of America s Disability Action Network in Delaware. At the time, I was working there doing my job, showing up every day while living with a condition that most people around me had no idea about. I didn’t talk about it much, even with close friends. I wasn’t ready.

The piece, How MS Affects Family and Friends, wasn’t just about symptoms or medical facts. It was about what this disease had really done how it chipped away at relationships, strained conversations, and created distance between me and the people I cared about. Writing it forced me to stop pretending everything was fine. It made me confront how much I had been holding in and how much I had lost because of it.

An Illness That Doesn’t Stay Contained

Everyone talks about what MS is a disease where your immune system attacks your own nervous system. But what most people don’t understand is what it does. Yeah, it messes with your balance, your vision, your energy, your focus but it also messes with your relationships, your confidence, and your entire sense of normal.

I’ve lived with it for years. And while the physical symptoms are unpredictable, it’s the emotional fallout that hit me harder than I expected. You stop making plans because you can’t trust your body. You feel distant from the people you care about because you don’t want to sound like you’re complaining. You go from being dependable to feeling like a burden not because anyone says it, but because the silence gets louder.

When I was asked to write about my experience, I knew I couldn’t just explain what MS does to the body. I needed to talk about what it does to your life. The parts no one warns you about the parts that don’t show up in brochures.

Personal Loss in the Wake of Diagnosis

In the article, I wrote candidly about how MS altered my closest relationships. One of the hardest things to accept has been the loss of friendships. Not all people are equipped to navigate chronic illness, and as symptoms became more unpredictable, some friends slowly pulled away. I don’t think they intended harm. They simply didn’t know how to stay present when my energy, mobility, or mental clarity fluctuated without warning.

The end of my marriage was another painful chapter I shared. MS didn’t cause our divorce on its own, but it was the backdrop to many of the challenges that would be faced. The emotional weight of chronic illness is real: fear, grief, shame, and frustration often replace clarity and connection. When the marriage ended, I was forced to confront the psychological impact of MS in a new way. It wasn’t just about managing my body anymore it was about rebuilding my life.

Even my relationship with my father deteriorated during this time. What was once a consistent source of guidance becoming a silence that still echoes. That loss was not dramatic, but it was deeply felt. It underscored something many with chronic illness know sometimes the people you thought would be there simply aren’t.

These are not details I include to dramatize my story. They matter because they reflect a truth shared by many in the chronic illness community invisible conditions often lead to invisible grief.

When an Image Speaks the Truth

There are moments in life when a single image captures more than words ever could. That was the case with the illustration I selected to accompany my article for Bank of America’s Disability Action Network. It featured a simple bench, shown in two parts. In the first, a person with MS sits beside a friend who asks: So, are you okay? In the second image, the same person sits alone. The friend is gone. The caption reads: I will be eventually. That image still sits with me. Because for many people living with invisible illnesses, this is not just symbolic it is lived reality. People often show up when the diagnosis is new. They ask how you’re doing. They send messages. They check in at least for a while. But as time passes, and the illness doesn’t go away, the calls stop. The visits taper off. The space next to you once filled with concern becomes painfully empty.

For me, that empty space became very real.

It showed up in the silence between friends who no longer knew what to say or didn’t bother to try. It appeared in the distance between myself and loved ones who struggled to accept that this version of me the one who was slower, more fatigued, more limited was here to stay. It showed up in the loss of a marriage that couldn’t withstand the emotional weight of chronic illness. It widened in the permanent rift between me and my father, a relationship that had already been strained but was further fractured as my diagnosis brought more vulnerability than he was willing to confront.

Each of those moments was its own kind of loss. And none of them happened overnight.

They happened slowly through canceled plans, unanswered texts, and the unspoken discomfort of people who didn’t know how to exist alongside my pain without minimizing it, ignoring it, or walking away from it entirely.

The bench in the image is not just symbolic of those who left it also represents the exhaustion of explaining yourself repeatedly, only to be misunderstood. It’s about the loneliness of hearing, but you don t look sick, as if appearance has anything to do with the internal chaos an autoimmune disease can cause. It’s about the fatigue that comes not just from the illness, but from trying to maintain connections that feel increasingly one-sided.

Invisible illness tests relationships in ways most people don’t talk about. It exposes the difference between empathy and convenience between those who show up, and those who only know how to support you when the struggle is short-term, palatable, or easy to name.

That image became a reflection of my own experience, but it also became a message to others like me: You are not imagining this. Your grief over relationships changed by illness is valid. And you are not alone in feeling like the world keeps moving while you are left sitting in the silence, trying to hold yourself together.

The truth is that chronic illness doesn’t just challenge your body it challenges every connection you’ve built. And when those connections falter or disappear, the emotional toll can be just as difficult as the physical symptoms.

But recognizing that truth naming it, sharing it is one step toward healing. And sometimes, one honest image can say what we’ve been trying to explain for years.

Resilience, Reconnection, and a New Foundation

But my story doesn’t end in disconnection. In fact, that period of loss and reckoning gave me the clarity to rebuild on stronger ground. Today, I’m married to someone who lives with her own invisible illness a Traumatic Brain Injury (TBI). She understands firsthand what it means to carry a condition others can’t see.

She is my fiercest supporter, the foundation of my daily life and “My Person”. During our wedding vows, she looked me in the eyes and said, We’re medical disasters together.

She said it during our vows “We’re medical disasters together.” It made everyone laugh, but for us, it was more than a joke. It was real. It was two people standing in front of each other, fully aware that we’re both carrying conditions that don’t go away. That we don’t always know what tomorrow looks like. That plans get canceled. That some days, just getting through is the win.

We don’t pretend it’s easy. Some days are hard physically, emotionally, everything in between. But we get through it because we show up for each other, exactly as we are. We give each other space when symptoms hit. We laugh when we can. We let go of expectations when we need to.

That mindset staying grounded, finding something good even in the mess comes from something I learned in the Army: Hunt the Good Stuff. It wasn’t just training; it became survival. It’s how I hold onto perspective when MS takes more than I expected. My wife and I live by that every day. No false positivity just real, gritty gratitude for what we still have and who we’re still becoming, together.

Why I Keep Sharing

Writing for the Disability Action Network at Bank of America was more than a publication credit it was an inflection point in how I view advocacy. For years, I kept most of my MS journey private, either to protect myself or to avoid the discomfort of others. But when I wrote that piece, I realized how much power there is in simply telling the truth.

I didn’t write it to elicit pity. I wrote it to challenge assumptions to help others see that MS doesn’t begin and end with physical symptoms. It reaches into every corner of your life and reshapes your identity, relationships, and outlook on the future.

I wrote it to show others living with chronic conditions that they are not alone in their experiences even the most painful ones. And I wrote it for those who don t live with chronic illness, in hopes they might walk away with more understanding and less judgment.

What Support Really Means

Support is one of the most overused and misunderstood words in conversations around chronic illness. People often say they support someone but what does that actually look like when the reality of illness sets in? What happens after the diagnosis, once the initial concern fades and the long-term uncertainty begins?

Support is not about grand gestures. It’s not about fixing what cannot be fixed. It’s about presence. It’s about consistency. For those of us living with chronic or invisible illnesses, support often begins with something very simple, but profoundly powerful: listening.

True support means listening without judgment or interruption. It means resisting the urge to offer unsolicited advice or quick-fix solutions, and instead simply holding space for someone’s reality even when that reality makes you uncomfortable. Sometimes, the most supportive thing a person can do is say, “I don’t understand what you’re going through, but I’m here.”

Support also means staying when it’s inconvenient. Chronic illness is not predictable or linear. It doesn’t follow a clean timeline or guarantee improvement. There are days when we seem fine and others when everything feels like it’s unraveling and often there’s no warning between the two. Many of us have experienced people pulling away not because they didn’t care, but because they didn’t know how to stay when the journey got messy. But that’s exactly when we need others the most.

It's about checking in even when we’ve been quiet. It’s about showing up not just in moments of crisis, but in the steady, uneventful stretches in between. It’s about asking, how are you really doing? and being ready to hear the real answer, even if it’s not pretty.

Support isn’t always loud or organized. Sometimes it’s just someone staying when things get hard when your body stops cooperating, when your words don’t come out right, or when your energy runs out halfway through a sentence.

It’s the friend who still texts even when you’ve bailed on plans five times. The partner who doesn’t take your bad days personally. The coworker who notices you’re quiet and asks if you’re okay and actually waits for the answer.

And sometimes, it’s nobody at all not at first. Because people disappear. And when that happens, support becomes something you have to rebuild from scratch. New people. New boundaries. A whole new definition of trust.

Support doesn’t mean fixing it. It means staying in it. Sitting in the unknown with us. Holding space without needing to rush to the solution. And yes, sometimes it means speaking up not for us, but with us. Telling the truth. Raising awareness. Calling out the systems that make this harder than it needs to be.

Because living with an invisible illness is never just personal. It’s political. It’s structural. It’s exhausting and no one should have to navigate that alone. Ultimately, what people living with chronic illnesses want is not perfection. We don t expect anyone to have the right words all the time. But we do hope for effort. For presence. For recognition that our lives may be shaped by something invisible but that doesn’t make our needs, our struggles, or our stories any less real.

On the long and often isolating road of chronic illness, that kind of support isn’t a luxury it’s a lifeline. It’s the difference between feeling like a burden and feeling like a human being. Between being dismissed and being seen. Between simply surviving and being allowed to truly live.

That is what support really means.