What It’s Really Like to Live with a Chronic Illness

Some mornings, it feels like my body has been hit by a tractor-trailer truck carrying every flu virus known to man. My bones ache, my limbs are heavy, and my brain struggles to string thoughts together. To the outside world, I might look “fine.” But on the inside, I’m wrestling with exhaustion that doesn’t go away, pain that flares without warning, and a body that no longer feels predictable.

This is the reality of living with chronic illness. For those walking this path alongside me, I know you get it. For those who haven’t experienced it firsthand, I want to pull back the curtain a little. Because while chronic illness can take so much - our energy, our independence, our confidence - it can also shape us in unexpected ways. And most of all, I want you to know…healing is possible.

Living with a chronic illness means constantly reevaluating what most people take for granted. The “little things” - walking through an airport, driving a car, going out for dinner - become the biggest hurdles. Last month, I traveled alone from Oregon to New Hampshire to visit family and friends. In my pre-illness life, this was nothing unusual. I’ve flown solo dozens of times, navigated airports without a second thought, and driven wherever I needed to go. But this time, I was riddled with anxiety.

What if the long walks between gates were too much? What if my body gave out in a busy airport? What if I couldn’t drive safely anymore?

You see, I had stopped driving months earlier because my symptoms made it feel unsafe. My processing was slow, and I experienced tremors and loss of motor control on my left side. For someone who had always been independent, this loss shook me to my core.

But here’s the surprising thing: I did it. I got through the airports. I drove again. It wasn’t effortless, and it left me tired, but it was possible. And that gave me something priceless: confidence. A reminder that my body, while still healing, could rise to the occasion.

One of the hardest parts of that trip wasn’t the travel, it was seeing my friends and family after more than a year apart. When I left, I was still able to hide my symptoms. But now? My illness was obvious. My body moved differently. My energy was limited. And my loved ones, who had always known me as vibrant, active, and unstoppable, now saw a different version of me - one I had worked so hard to conceal.

It was uncomfortable. Vulnerable. Scary. I wasn’t in control of how they perceived me anymore. And I hated worrying them. For those of us living with chronic illness, this is one of the quiet griefs: the loss of who we once were in the eyes of others. The fear that people only see our sickness instead of us. And yet, that vulnerability is also where connection deepens. Being truly seen - messy, imperfect, unwell - opens the door to real love and understanding.

Chronic illness steals confidence in a thousand subtle ways. Confidence in your body, when one day you’re strong and the next you can’t trust your legs to carry you across the room. Confidence in your abilities, when you remember the workouts you used to crush and grieve the gap between then and now. Confidence in how you’re seen, when the endless explaining and the feeling of letting others down chip away at your sense of self.

But confidence can be rebuilt. It doesn’t come from returning to the “old you.” It comes from honoring the new you, the one who shows up even when it’s hard, who celebrates small wins, who knows rest is not weakness but wisdom. Every step matters. Getting through a trip. Driving safely again. Showing up, even when it means being vulnerable. These moments stack together and slowly, surely, rebuild trust in yourself.

I won’t sugarcoat it, healing from a chronic illness is not easy. It’s a marathon, not a sprint. Progress often feels painfully slow. But it does happen. Today, I have fewer bad flare days. My brain fog and slow processing are 90% better than they were. Each week, I’m able to do a little more physically. I’ve even begun to dream again about going to a yoga studio, and maybe even lifting weights before the end of the year.

A positive mindset has been essential. Not the toxic positivity that ignores pain, but the kind of mindset that believes in possibility even when evidence feels thin. The kind that looks at a hard day and says, “This isn’t forever.” The kind that trusts the body’s capacity to heal when given the right support, time, and care.

If you’re walking through chronic illness, I want you to know you’re not alone. I see you. I know the ache of fatigue that doesn’t lift, the frustration of losing independence, the sting of being misunderstood. Your feelings are valid, and your pace is enough. Healing may not look like a straight line, but it is possible.

And if you love someone who is living with chronic illness, please believe them. Don’t minimize. Offer compassion more than advice. Understand that what may look small - an outing, a conversation, a drive - can feel monumental. Sometimes the most powerful gift you can give is simply listening and saying, “I believe you.”

 If you’re walking through this, or loving someone who is, I’d love to hear your story. Healing is a journey that is best walked together, and community matters more than you might imagine. You can always reach out, whether to share, to ask for help, or just to know someone else “gets it.” Because while chronic illness takes so much, it doesn’t take away our capacity to connect, to heal, and to hope.