In the waiting room, there are people everywhere, and I have never felt so alone.
A woman across from me flips through a magazine. A man near the window scrolls through his phone. A cooking show plays on the TV in the corner, all bright voices and braised short ribs. We are all waiting, but not for the same thing. In 20 minutes, a doctor will walk through that door and change the shape of my life. The others will go home, talk about traffic, maybe decide what to make for dinner. I’ll go home carrying something no one can see.
That’s the part people don’t warn you about. Chronic illness changes your body, but it can also build a wall.
When I found out I had multiple myeloma, the news came the way impossible news often does, first in a soft sentence, then all at once. The world kept moving. I felt pushed to the edge of my own life, close enough to see everything, far enough to know I no longer fit inside it in the same way.
Multiple myeloma is a blood cancer that starts in plasma cells in the bone marrow. People don’t see it on the surface. They see the fatigue, the pain, the appointments, if they see anything at all. For a while, you can look like yourself and not feel like yourself, and that gap can feel lonely in a way I never expected.
From there, my life split into treatments. A stem-cell transplant. CAR-T therapy, where my immune cells were taken out, changed to fight the myeloma, and put back into my body. Another newer treatment after that. Medicine has done things for me I never thought possible. It has also taken things that never show up in lab results.
The side effects didn’t arrive one by one. They piled up.
Neuropathy settled into my hands and feet during treatment and never fully left. It brings tingling, pain, and a constant negotiation with simple things, like holding a cup, buttoning a shirt, or walking on a cold floor. You learn how to adjust. You don’t always learn how to accept it, because acceptance can feel too close to surrender.
Fatigue has its own weight. This isn’t ordinary tiredness. Sleep doesn’t fix it. Some days, making it from the bedroom to the kitchen feels like enough for one day. Then you have to pretend that level of effort is normal, or at least manageable, and that pretending takes energy too.
Then there is “chemo brain.” Words go missing. Thoughts slip away. Memory gets foggy. Before treatment, I thought fast and kept a lot of details in my head. Losing that ease hurt more than I expected, because no one else can see it, but I feel it every time I reach for a word and find nothing there. It changes the way I speak. It changes the way I connect.
That is how the wall grew, not all at once, but by inches. Pain. Fatigue. Fog. Another day when I could not show up in the way I wanted to. Another day of trying to look okay enough for everyone else.
What surprises people most is that this loneliness does not require an empty room. It can live in family dinners, waiting rooms, and conversations with people who love you and want to help. You can sit beside someone who cares about you and still feel a distance that no kindness can erase.
My husband has been with me through all of it. Every appointment. Every infusion. Every rough night. Every hard morning. He was scared for me. I was scared inside the life this disease had changed. Those are not the same fear, and love does not make them identical. It just keeps one person beside the other while they try to carry them.
The things people say after a diagnosis often come from a good place. “You look great.” “You’re so strong.” “Just stay positive.” I know those words mean well. I also know what they can ask of me. They ask me to look like the version of myself that helps other people feel at ease. So I do. Then I get home, drop the mask, and sit with the part that no one saw. That work can wear a person down in a way that rarely gets named.
Hope has not looked the same every day. Some days it was loud. Some days it was almost silent. Still, it stayed with me through transplant, CAR-T therapy, and the newer treatments that came after. Hope did not come from pretending this disease was small. It came from choosing to keep going, even when the road felt narrow. It came from medicine that gave me more options. It came from my husband sitting across from me in yet another waiting room. It came from the fact that people do live longer and better with multiple myeloma now than they once did. It came from research that keeps moving. It came from being here.
If you are living with multiple myeloma, or any serious illness, and your hope feels fragile, that does not make it false. Hold onto it anyway. On the hardest days, you may need to hold it with both hands.
If you want more support, education, and stories that meet you where you are, compassionatevoices.org has resources for people facing cancer and other serious illnesses.
