When Pain Has a Name
I thought an answer would make me feel better.
And in some ways, it did.
There is relief in hearing that something on a scan helps explain what you have been feeling. After trying to describe pain, sensations, and changes in a body that doesn’t always cooperate, there is comfort in knowing there may be a reason for at least some of it.
But I wasn’t quite prepared for how heavy an answer could feel.
I wanted to understand why my neck hurt the way it did. Why certain sensations traveled down my arm and into my hand. Why my back could make an ordinary day feel like more than I had the strength for. I wanted to be able to point to something and say, There. That might explain it.
When I finally had more words for what was happening, I found myself holding relief in one hand and fear in the other.
Because the answer wasn’t simply, “Here is why you hurt.”
It also brought questions about what comes next. About surgery and recovery. About the parts of my spine that have already been through so much and the parts that are asking for attention now.
I wanted answers. I just didn’t want my body to need them.
For a long time, I have lived with the kind of pain that becomes part of the background of a day. Not because it is small, but because life keeps asking you to do things while it is there.
There are meals to think about, appointments to make, messages to answer, and things around the house that need tending. Some mornings I can move through a few of those things without stopping to consider each one. On other days, I find myself looking at a task and quietly trying to decide whether my body will let me finish it.
Even something I enjoy can come with that calculation. I might want to stand in the kitchen and cook, to take my time and make something good. But somewhere along the way, I may have to stop and sit down. I may have to ask for help, leave part of it for later, or change my plans altogether.
The wanting is still there. That is sometimes the hardest part to explain.
I haven’t stopped wanting to participate in my own life. I haven’t stopped caring about the things that need to be done or the people I want to do them for. There are simply days when what I want and what my body can manage do not agree.
There is a particular kind of loneliness in trying to explain pain that someone else cannot see. You search for the right words: aching, burning, sharp, heavy, tingling. You try to remember when it started and whether it travels and what makes it worse. You wonder if you have said enough, or too much, or if you have somehow chosen the wrong word for what is happening inside you.
And then you go home and keep living in the body you were trying to explain.
Sometimes I have looked at a report and felt grateful that there were words on the page. Other times, those same words have frightened me. I have read a sentence more than once, trying to understand it, then found myself wondering what it might mean for the days and years ahead.
Medical language can feel like its own country. There are words I have to look up, phrases I think I understand until I read them a second time, and details I want to ask about but worry I might forget when I’m sitting in the appointment.
I want to understand what is happening to me. I want to know which findings matter, which symptoms might be connected, and what choices I have. Asking those questions is one way I care for myself, even when I don’t feel particularly brave doing it.
Still, an explanation does not always come with a simple decision.
Sometimes knowing more means learning that there are several paths ahead, each with its own possibilities and uncertainties. It means listening to what a doctor recommends, thinking about what I have already been through, and trying to imagine what I can carry next. It means recognizing that I may need to ask the same question again before I understand the answer.
I am allowed to do that.
A name can help me ask better questions. It can help my doctors and me talk about what might be happening and what choices I have. But the words on a page do not tell the whole story of living with pain.
They don’t show the way I consider how long I can stand before I begin cooking. They don’t show the plans I measure against how my body feels that morning, or the thoughts that arrive when I imagine another recovery.
They don’t show the disappointment of looking forward to something and wondering whether I will be able to enjoy it. They don’t show the quiet adjustments I make before anyone else notices there was something to adjust.
And they don’t show everything else I am.
I am still the woman who loves pretty paper and a little glitter. The woman who wants to write, create, laugh, and make a home feel welcoming. I still have ideas I get excited about and people I love. I still find comfort in a beautiful page, a quiet moment, and the possibility that words I put together might reach someone who needs them.
My pain comes with me into many parts of my life, but it does not get to tell the whole story.
I am learning that I don’t have to feel only one thing about the answers I’ve been given.
I can be relieved that there is something to discuss with my doctor and sad that there is something to discuss at all. I can be grateful for the care I receive and still wish I didn’t need another surgery. I can trust my surgeon and admit that I am afraid.
I can also be angry. I can grieve the ease I once had, or the plans that have had to change. I can have a good afternoon and still feel the weight of what may be ahead. One feeling does not cancel out another.
Some days, naming the pain helps me feel a little less lost. Other days, I need to put the reports down and let myself be a person for a while—someone who can make a cup of coffee, sit with her thoughts, or find something beautiful in an ordinary afternoon.
I don’t have to spend every quiet moment researching. I don’t have to solve every future problem before I allow myself to enjoy the day in front of me. There is a time for questions and a time to set them beside me, knowing I can return to them when I have a little more room.
The answers are still there when I come back. So am I.
And perhaps that is what I want to remember most: a name may help explain what my body is carrying, but I am the one living the life around it. I deserve care for all of it—the pain, the questions, the fear, and the parts of me that still reach for a little beauty.
If you are waiting for answers, or learning how to live with the ones you have received, I hope you can give yourself room for whatever you feel. Relief, sadness, anger, uncertainty—even gratitude and fear sitting side by side.
You don’t have to make peace with everything today.
There is a place for you here, even while the questions remain.
— Casey
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Continue reading: The Answers I Carried Home