“Living with NETs can be such a roller coaster ride some days.”

“Life is a roller coaster whether you have NETs or not. You just have to learn to enjoy the ride.”

So ended a recent text exchange with my friend who lives several states away and is also living with NETs. We had been discussing her recent social media posts, which together received well over 300 responses. Like many others, I was deeply moved by her honesty and the way she described experiences that so many of us feel but struggle to express.

Living with a chronic illness is challenging on many levels. The physical toll is only part of the story. The emotional weight, the uncertainty, and the quiet adjustments of daily life often remain unseen. Not all of us can put those feelings into words as powerfully as my friend has. With her permission, I want to share some of her reflections.

“I’ve learned that this disease is not something you simply ‘get through.’ It stays with you. The constant monitoring, monthly injections, endless appointments, and the bone deep fatigue become part of your everyday life. Over time, it wears on more than just your body. It changes how you see yourself.”

“There are days when I’ve come close to giving in. And then there are days when I push forward simply because that’s what we do. I put on a face of health and normalcy for my family and the world. I smile, I reassure, and I say I’m okay even when I’m not.”

“What once took a couple of hours can now take all day, or longer. I make plans with the best intentions, only to cancel them because my body refuses to cooperate.”

“I’ve told myself it’s just age catching up with me. But deep down, I know this is NET.”

“I am profoundly grateful to still be here. That gratitude carries me through many days. But there are times when the weight of this disease becomes too heavy, and I need a day in bed just to recover. Living with NETs is not a one time fight. It is a continuous balancing act between pushing forward and knowing when to rest.”

“NET is both a blessing and a curse. It gives us time, but it asks us to live within limits we never chose. I am happy to be alive, yet I grieve the loss of feeling truly healthy.”

“If you are living with NETs and feel like you are leading a double life, please know this. You are not weak. You are not failing. And you are not alone. Every day you show up in this body is an act of strength, even when no one else can see it.”

She also shared these affirmations for living with NETs:

• My experience is real, even when it is invisible to others.

• Rest is not giving up. It is part of surviving.

• I am allowed to grieve the life I had while being grateful for the life I have.

• My worth is not measured by productivity or appearances.

• I am doing the best I can in a body that carries more than most can see.

• I am not alone. Others walk this path with me.

• Showing up, in whatever way I can today, is enough.

These words resonated with hundreds of people because they speak to a truth many in the NETs community understand deeply. Living with NETs is not a single battle to be won. It is an ongoing journey of adaptation, resilience, grief, gratitude, and hope.

The NCAN family wants you to remember that you are not alone. Every day with NETs can bring struggle, gratitude, or both at once.

If you need support, understanding, or simply someone to listen, we are here for you.

Whatever today looks like, you do not have to face it alone.