Content note: This personal essay discusses chronic pain, caregiver distress and suicidal thoughts. Crisis support is available below.
Editor’s note by Brendan McDonald: Michael J. Carter is a pseudonym used by the contributor to protect his wife’s privacy. His wife lives with Complex Regional Pain Syndrome (CRPS). This essay describes one husband’s experience of chronic pain, marriage and caregiving. It is his perspective, not a description of every person living with chronic pain or every relationship affected by chronic illness.
I never imagined our lives would turn out like this.
Before chronic pain reshaped our days, our life felt ordinary. We argued about grocery lists and movie nights. We planned vacations, birthday surprises and house renovations. We laughed a lot.
Now my wife lives with constant pain, and our lives revolve around something neither of us chose.
I have spent years trying to understand my wife’s pain. I can see what it does to her. I can see what it has done to our marriage. But I cannot feel it for her, fix it or make it disappear.
I’m writing about what that has been like from my side of the bed.
The Day Everything Changed
It started with what seemed like a pinched nerve: a burning pain in her lower back that refused to fade.
Doctors prescribed rest, then painkillers, then physical therapy. Nothing worked. Weeks turned into months. Then years.
Eventually, she was diagnosed with Complex Regional Pain Syndrome.
Having a name for what was happening didn’t make the pain easier or our future clearer.
Some days she can barely get out of bed. On others she pushes herself until she has nothing left. We learned quickly that making plans can be risky because neither of us knows what kind of day she will be having.
That uncertainty became part of our marriage too.
Trying to Understand My Wife’s Chronic Pain
Living with someone with chronic pain has changed how I understand illness.
I have watched pain take away things my wife once did without thinking: sleeping properly, seeing friends, working, enjoying hobbies, leaving the house because she felt like leaving the house.
I miss those things for her.
I also miss parts of the relationship we used to have.
That is difficult to admit because it can sound as if I am blaming her for being ill. I’m not. She didn’t choose any of this.
But pretending that chronic pain has only affected her would also be dishonest.
There are days when I feel helpless. There are days when I feel resentful, and then guilty for feeling resentful. Sometimes I don’t know whether she wants me to help, listen, leave her alone or somehow understand something I cannot possibly experience inside my own body.
Love does not automatically give you the right words.
Sometimes I get it wrong.
Supporting My Wife While Struggling Myself
I’ve read plenty of advice about how to support a partner with chronic pain. Empathy matters. Patience matters. Communication matters.
Knowing that doesn’t make any of it easy.
I learned to cook more, clean more, run errands and manage appointments. I learned which medications she takes and when. I learned pain scales and what happens when we end up in an emergency room.
Those were practical things. They gave me something to do.
The emotional part has been harder.
I have often struggled to know where caring for her ends and looking after myself begins. Sometimes an attempt to help makes her feel smothered. Sometimes something I intend as reassurance makes her feel misunderstood.
Then both of us feel worse.
There is loneliness in caring for somebody you love while knowing you cannot make their pain stop.
I don’t think people talk about that enough.
When Despair Enters a Marriage
The pain is relentless. So is what years of pain can do to a person’s hope.
I remember the first time my wife said she wished she didn’t exist.
I froze.
Not because I didn’t care. The opposite. I cared so much that I had no idea what to say.
I held her hand and told her I loved her. I wanted to pull her away from what she was feeling, but love does not give you that power.
After that, I became afraid of saying the wrong thing.
She sometimes felt like a burden. She believed she had ruined my life. There were moments when she thought I would be better off without her.
I began keeping more of my own feelings to myself because I didn’t want to give her another reason to believe that.
That created another problem.
We were trying to protect each other by saying less, and becoming more isolated from each other in the process.
When Family Doesn’t Understand Chronic Pain
We also discovered how difficult chronic pain can be for other people to understand.
At first, everyone was sympathetic.
As weeks became months and months became years, some people stopped asking. Others offered advice.
She was told to think positively. People suggested treatments they had seen online. Some appeared to question whether pain they couldn’t see could really be as severe as she said it was.
Those conversations became exhausting.
Eventually, we stopped explaining ourselves to everyone.
I stopped believing I could make every relative understand what chronic pain had done to our lives. Some people listened. Some didn’t.
That was painful in a different way.
The illness had already made our world smaller. Losing people who did not understand it made that world smaller still.
Grief Without a Funeral
There is no funeral for the life we expected to have.
That may be one of the strangest parts of chronic illness.
You grieve things while still living inside them.
We don’t go out as often. Plans are harder. Spontaneity has mostly disappeared. Our relationship includes medication schedules, appointments, exhaustion and decisions about what her body can tolerate that day.
At times I have felt less like a husband and more like a caregiver.
I know that she has lost things too. More than I have.
But grief is not a competition.
We can both love each other and miss the life we thought we were going to have.
What I Wish Other People Understood
I wish people believed chronic pain without requiring visible proof.
I wish they understood that somebody can cancel plans repeatedly and still desperately want a social life.
I wish people stopped assuming there must be a treatment we simply haven’t tried yet.
Mostly, I wish more people knew how to listen without immediately trying to solve something.
There are problems without neat solutions.
Chronic pain has taught me that.
What Chronic Pain Has Done to Our Relationship
There are still moments when I see the relationship we had before all of this.
My wife smiles. She reaches for my hand. We make each other laugh.
Those moments matter.
They do not erase the harder ones.
Our marriage has changed. Intimacy has changed. The way we spend time together has changed. Our expectations of the future have changed.
There are days when surviving the day in front of us is enough.
I used to think that sounded terribly bleak.
Now I think it is simply an honest description of some periods of our life.
Why I’m Still Here
Sometimes I ask myself why I stay.
The answer is not obligation, and it is not pity.
I love my wife.
That love is more tired than it used to be. It carries grief that wasn’t there when we married. But it is still love.
She didn’t choose this.
Neither did I.
Some days staying feels like a test of the promises we made to each other, especially when neither of us recognises the life we are living.
But she is still my wife.
And I am still her person.
That matters to me.
If Your Partner Lives With Chronic Pain Too
I cannot tell another husband, wife or partner what they should do.
I only know what this has been like for me.
Love and resentment can exist at the same time.
So can grief and gratitude. Exhaustion and loyalty. Wanting to escape for an hour and wanting to stay for a lifetime.
I spent a long time thinking some of those feelings made me a bad husband.
Now I think they make me a human being trying to live through something very difficult alongside another human being who is living through something I can never fully understand.
My wife is in constant pain.
That has changed her life, my life and our marriage in ways I still struggle to accept.
It has not made her less worthy of love.
And it has not made our relationship simple.
Some days we manage better than others.
For now, we keep going.
Related reading from URevolution
Sex and Chronic Pain: 6 Ways to Improve Intimacy with a Chronic Illness
A closer look at intimacy, communication and relationships when chronic pain affects sex.
“Just Get Over It”: Why Those Words Can Hurt
On the damage caused when illness, pain or mental health experiences are dismissed rather than heard.
