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What chronic pain, treatment models, and isolation actually do to mental health
Mental Health Awareness Month is every month in a CRPS home.
Complex Regional Pain Syndrome, also called CRPS, RSD, AMPS, RND, Síndrome de Dolor Regional Complejo in Spain, and Distrofia Simpático Refleja in Mexico, has so many names that half the time people do not even realize they are talking about the same thing. That alone makes awareness harder, because when one condition has five different names, it becomes really easy to miss how widespread it actually is.
But even when people recognize it, most still only think about the physical side.
They do not see what it is doing to a young person’s mental health.
What This Is Actually Doing to Them
Because for young people with CRPS, the pain does not stop. There is no break from it, and over time, that changes how their brain functions. Pain is not just something you feel. It affects how you think, how you process, and how your body responds to everything around you. Chronic pain keeps the nervous system in a constant state of stress, which over time impacts emotional regulation, attention, and memory.
So now you have a young person whose body is constantly in a state of stress, and that is before we even get into what happens when they try to get help.
When the System Doesn’t Know What to Do
Because it is not just that providers do not understand CRPS. It is also what happens when a young person’s CRPS does not respond to the one way they have been taught to treat it. Or when that young person has comorbidities that complicate treatment.
When the standard approach does not work, the explanation often shifts to a psychological one. Sometimes that is said outright. Sometimes it is more subtle. But kids know the difference between being helped and being dismissed.
And then we send them into treatment.
What They’re Taught to Do With Their Pain
The primary treatment model for kids with CRPS in the U.S. is built around pushing through pain. Programs at major hospitals, including the Children’s Hospital of Philadelphia and the Cleveland Clinic, use versions of this approach, which includes drilling it into their heads that they are not allowed to talk about their pain and reprimanding them when they do.
Not suggesting it. Not encouraging it.
Drilling it in.
Parents are told not to ask. Kids are told that talking about pain reinforces it, that ignoring it will make it go away. And for some kids, maybe that works.
But for a lot of them, it does not.
And what they learn instead is that no one wants to hear about their pain. So they stop talking about it. And then they stop mentioning when things get worse. They stop reporting new injuries. They stop saying anything at all because they have been taught that saying something is the problem.
At the same time, the rest of their life is shifting around them.
They are losing the sports and activities that once defined them. They are watching their friends move on while they stay stuck, managing something no one else can see. And even when they try to participate, it comes at a cost. More pain, more recovery time, or needing accommodations that make them feel like a burden.
So it stops being just “this hurts.”
When It Stops Being About Pain
It starts becoming “I am the problem.”
That shows up in school too. Not because these kids suddenly are not capable, but because pain affects attention, memory, and processing. The American Psychological Association says it directly: “Chronic pain can impair attention and memory.” But young people do not interpret it that way.
They do not think, “this is my pain.”
They think:
“I am dumb.”
“I am a failure.”
“Why can I not do anything right?”
“I used to be able to do this… what is wrong with me?”
And all of that builds on itself.
There is exposure to medications, combined with the reality that they would do almost anything for even a short break from the pain.
What They Carry That We Don’t Always See
There is also the cost.
Kids see more than we think they do. They see the appointments, the bills, the missed work, the stress. Even when we try to hide it, they know. And they make meaning out of it.
Some of them decide they are not worth the strain.
And that does not go away, whether or not they ever reach remission.
They are also thinking about the future in ways kids should not have to. Relationships, jobs, whether anyone will accommodate them, whether they will even qualify for disability if they need it. Because CRPS is not always visible, and that matters more than it should.
The Part That Stays With Them
Then there is the medical trauma that comes with all of this. Repeated painful treatments. Being pushed through pain. Being in situations where they lack control. That does not just disappear when the appointment ends. The National Institute of Mental Health describes trauma as leading to “intense, disturbing thoughts and feelings related to their experience.” And a lot of these kids are carrying exactly that.
Layered on top of it is the constant cycle of hope. Every new treatment is supposed to be the one that works. Sometimes it does, for a while. And when it stops working, or never works at all, that drop is real. And it happens over and over again, making it harder to believe the next time will be different.
When It Goes Away… and Comes Back
Remission complicates this even more.
When pain goes quiet, everyone wants to call it a cure. And I get why. When you have been living in that level of pain, you want to believe it is over. But remission is not always permanent.
So when pain comes back, it is not just the pain that returns. It is the loss of something they thought was finished. Kids who thought they had beaten it now feel like they have failed, and if that remission was tied to faith or meaning, that gets shaken, too.
Which is why, when pain comes back after remission, some kids don’t say anything.
Because they know how happy everyone is, and they don’t want to have failed or done something that takes that away.
So they stay quiet, trying to protect the people around them, even when it means carrying more on their own.
And that silence is where things start to get really dangerous.
What Actually Helps
What helps is not complicated, but it does require intention.
Kids need to know they are allowed to talk about their pain. Not constantly, not as the only focus, but if they need to say something, it will not be shut down. Language matters too. Remission is not a cure, and framing it that way makes it harder when things change.
Support matters, but it has to come from people who actually understand pain, or it just becomes more of the same experience kids have already had. Mental health services are vital, but must be provided by someone who has a strong and supportive skill set when it comes to dealing with young people in chronic pain.
And connection matters in a way that is hard to explain unless you have seen it.
Connection Changes Things
Kids need access to other kids who understand. They need spaces where they do not have to explain themselves, where they can talk openly, or not talk at all, and still be understood. Online, age-specific peer support groups like those run by Ferocious Fighters can be a real lifeline for kids, teens, young adults, and their caregivers, especially when most of the people around them do not fully understand what this is like.
Kids also need to see that they are not alone on a larger scale, that other families are dealing with this, and that someone is paying attention. Organizations like RSDSA do a lot of that work through education, advocacy, and resources that help families understand what they are dealing with and how to navigate it, especially when it feels like no one around them has answers.
It also matters for kids to see what this looks like long term. Not just the hard parts, but the fact that people who have CRPS as kids grow up and do amazing things. An example that has been an encouragement in our home is Nazair Jones. He has CRPS and, as a teenager, even spent time in a wheelchair. He went on to play college football, made it to the NFL, and now leads the CRPS Warriors Foundation. That matters. It shows kids that this does not just disappear, but it also does not define who they become.
They need chances to connect in real life, too, not just online. To be around other families, to show up somewhere and not feel like the only one. Community events and awareness walks, like those organized by Fight the Flame, as well as larger efforts like the national walk through RSDSA or events like the Walk to Conquer CRPS, give families a way to come together and just exist in a space where this is understood without a long explanation.
And sometimes what helps most is just getting to be a kid again, even if it looks a little different than it used to. Programs like the summer camp run by The Coalition Against Pediatric Pain give kids in pain a chance to spend time with other kids who understand, in an environment where they do not have to constantly explain or defend what they are going through.
These are not the only options, but they are examples of the kinds of support that matter.
Because that is what actually makes a difference.
If you are reading this and this is your child, I see you.
I see the way you are trying to hold all of this together while learning something no one ever prepared you for. I see the decisions you are making, the second-guessing, the moments where you are not sure what the right thing even is anymore.
And if this is you, I need you to hear this.
You matter.
You are not a burden.
You are not a failure.
You are dealing with something that is incredibly hard, and you are still here.
That takes more strength than most people will ever understand.
You are courageous. You are strong. And you can make your life amazing, whether or not you find remission. You are a fighter.
You are allowed to need help. You are allowed to reach out. And if you need help finding people who understand, ask. There are connections out there, and you deserve to have them.
You do not have to do this alone.
Love Always,
Meg
P.S. If you or your child needs immediate support:
In the U.S., call or text 988 to reach the 988 Suicide & Crisis Lifeline
In the UK, contact Samaritans at 116 123
In Canada, call or text 988
In Australia, contact Lifeline Australia at 13 11 14
