Oct. 12, 2025
Acceptance, Agency & Chronic Headaches: How Benjamin Reclaimed His Life
Chronic pain doesn’t have to steal your purpose. In this episode, Benjamin shares how he’s navigated life with cluster headaches—and how he’s turning his journey into a mission to help others. Key takeaways How Benjamin first experienced his illness and what followedWhy acceptance became a turning point—not surrenderDaily rhythms and small rituals that anchor himRelationship dynamics: the role of honest, nonjudgmental communicationHow lived experience shapes credibility in pain workIntegratin...
Chronic pain doesn’t have to steal your purpose.
In this episode, Benjamin shares how he’s navigated life with cluster headaches—and how he’s turning his journey into a mission to help others.
Key takeaways
- How Benjamin first experienced his illness and what followed
- Why acceptance became a turning point—not surrender
- Daily rhythms and small rituals that anchor him
- Relationship dynamics: the role of honest, nonjudgmental communication
- How lived experience shapes credibility in pain work
- Integrating mind and body: why they can’t be separated in chronic illness
- What Benjamin’s next steps look like (coaching, writing, building community)
If you’re a clinician, coach, or person in pain interested in bridging lived experience and evidence-based practice, this one’s for you.
🎯 Subscribe for more conversations with pain leaders.
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Modern Pain Care is a company dedicated to spreading evidence-based and person-centered information about pain, prevention, and overall fitness and wellness
WEBVTT
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I actually remember the day that the first time it occurred, we were moving and.
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It just came out of nowhere, just a bang nail through the eye, and I just crumbled on the floor.
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I didn't know what was happening.
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You just heard Benjamin describe the moment everything changed when pain blindsided him in life as he knew it suddenly shifted.
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In this episode, you'll hear the full story behind that moment and what came after.
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Benjamin Plambech a father of two from Denmark, lives with one of the most brutal headache conditions, known cluster headaches.
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But this isn't just a story about suffering.
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It's about choosing purpose for building identity and turning lived experience into impact.
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We'll explore what helped Benjamin move forward, how acceptance reshaped his mindset, how open communication saved his marriage, and how he's now using his journey to support others in pain.
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Whether you're a clinician, a coach, or somebody navigating pain yourself, this conversation will leave you thinking differently about what healing really means.
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Now onto the episode.
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This is the Modern Pain Podcast with Mark Kargela.
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My name is Benjamin.
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I'm from Denmark, so it's actually, on the other side of the earth here.
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I'm 37 years old.
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I have two small kids, two boys, two and four.
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And I'm married to my wife Sienne for 15 years now.
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my background is actually you know with this in mind, I have a chronic illness called cluster headaches.
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For those who don't know it I can tell that it's a sort of very painful headache.
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That's just, I get some some attacks where it feels like someone is banging a nail inside my eye from inside.
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It's incredible painful.
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My story also to to get to Mathildes course is actually starting there because of the illness I have in Denmark.
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We, we are so fortunate that I can the government actually pays me to go home right now, so I'm retired.
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How did the headaches come about?
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Was there anything you feel like looking back contributed to that?
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Or was it just as pain can be just a random occurrence?
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How did that show up for you?
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I actually remember the day that the first time it occurred, we were moving and.
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It just came out of nowhere, just a bang nail through the eye, and I just crumbled on the floor.
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I didn't know what was happening.
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So I was pretty sure that was it.
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Now I'm dead.
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It's I've really scared because I've never ever felt anything like that before.
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And was just out of the blue?
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No nothing before or after?
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Just yeah, and went on for a bit.
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I don't know.
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30 minutes, 40 minutes where I just wasn't complete pain.
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And then it just disappeared as quickly as it came.
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So of course we, that, that started the whole doctor of course thing and so on.
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And they told me it was cluster headache.
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And yeah, again, I never heard of it, so I was really scared for the first period of time there.
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How was your journey in healthcare?
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There's various journeys.
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Some not bad, some, good, some, less than ideal.
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I'm wondering how your journey in healthcare was, is how you felt as a patient.
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You were your situation, was validated, listened to what were your thoughts?
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I was actually one of the lucky ones, I think, because everyone I spoke to took it incredible, seriously.
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And my doctor fortunately just looked at me, looked at how I described and sent me on to a neurologist, I believe the English word as well who, who make the tests and so on.
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And gave me that the cluster of headache.
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And from there, from.
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Everyone, governments people and doctors, nurses, everyone.
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I have, I've always felt that I, they took it really serious.
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So it's been a good journey.
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It's been an easy journey also for me.
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Which is great.
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I think it's a testament that I think a lot of, healthcare folks are recognizing the need to be good humans out there, not just healthcare prac professionals and make sure that we take the person's unique, situation into account and validate their unique situation.
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How did it come to the point you've gotten into Mathilde's pain coach community?
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'Cause it sounds like obviously there, as you mentioned.
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Your career, you retired from your career and it left some space.
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How did pain coaching become something that was something you were interested in getting into?
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I think for most folks when you get a Chronicle illness, there's a period of time where you just give up or something.
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You just, this whole new situation you have to adapt to.
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And I was of course scared.
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I was in pain all the time.
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I felt, I, yeah I told my wife, I felt like I was a waste of space because I couldn't help her.
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I couldn't help the kids, just everything just went.
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I was just trying to survive and then at some point I just thought to myself that I didn't want to live my life like that chronic illness or not.
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I wanted to be in charge of what I wanted to do.
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So it actually started with with an Instagram account that I created myself just to, for my own sake.
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I posted, make some posts.
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Just for my, his right about about this stuff.
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And that started this network journey.
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And.
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I don't know.
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It's I've been following Mathilde for, I don't know, two years, I think on the sideline, see what she was doing.
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And it just lit a fire in me and I could see just things that I could of course, use in my own situation to just to get a grasp around my life again.
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But also that.
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That need.
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Because when you are online, you see a lot of people who are in the same situation but feel they never get hurt or they don't feel like they're lonely or all this.
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So, so, so that whole journey for me, wa was, it is incredible exciting because I really want to be able to help others as as I feel some people have helped me.
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That's great.
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I think that often going through that journey yourself can be such a powerful motivator.
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And thankfully you've gone through a relatively good journey as far as having healthcare folks that are very supportive, but it sounds like you're encountering some of the people who haven't had the best journeys or felt like they've been listened to or heard or understood for what they're dealing with.
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So good on you to start helping those folks connect the dots.
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I'm wondering, as you've been through your own journey and.
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Sounds like you've done a lot of studies on pain, and obviously if you're with Mathilde, she's gonna help you connect the dots on a lot of that stuff.
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I'm wondering some of the major, things that you felt have been helpful for you as you've as your understanding of pain has evolved maybe over time.
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Like are, have there been any like key things that you felt have been very helpful for your understanding of pain that have helped your own situation?
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I talked with a man years ago and he told me that the best thing you can do is accept your situation.
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And as I studied that as a concept, it just made a lot of sense because my life is much better now because I accept that I have this this illness.
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I accept that some.
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Days there's pain, and then I accept that those days are just bad.
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But when before I, I was, almost in a depressive stage, because then I would be in pain, but I would also think, oh, now I'm not helping my wife.
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I'm not helping with the kids.
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My employer is mad again and all that, and it just fills your head up.
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So for me, that word, the.
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To accept that situation.
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And then actually I try to let myself be in those feelings or whatever you have on the bad days.
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Just let them be.
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If you're frustrated, be frustrated.
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Just let it out.
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It creates small space in my brain for everything else, so it's not just in a depressive state.
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So it's been words has just been my slogan.
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Some people when they hear like in pain'cause acceptance and commitment theory is a big component of a lot of chronic pain treatments and programming and things and that word can sometimes be a ch a challenge for some folks when it's not understood, like the context of what we're talking about with acceptance.
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I'm wondering if you come across some people who are in pain and they're really pushing back against that word acceptance, I'm wondering how you would advise them as far as what it means to accept it versus like some of the negative connotations that might be out there in regards to that word.
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I think a lot of it has to do with, when you use that word, it doesn't have to be that, just accept your situation.
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You are ill and you'll never get any better.
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That's the negative version of that word.
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But to, to.
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To talk with someone and try to explain that the acceptance that I'm talking about here is just that you, you don't have to create a barrier in your mind where.
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Just have to be sad all the time, but just you have to accept, now I am in this state, which means, of course.
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Maybe I am not able to do what I've done before.
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Maybe sometimes things take a lot longer but just to accept that you still have a great life.
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You can, you could be happy still because you don't accept the disease.
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You, it, you accept the terms who comes with it.
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As you're charting your path, with a new situation where you're accepting the presence of a, accompanying illness that's with you now.
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I'm wondering what has anchored you as far as things that have anchored you to push forward, like what have you?
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You use to, to drive your pursuits of things like,'cause sometimes it's hard for people to say, I'm gonna be okay with this.
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Pretty significant headache situation on board with me.
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What keeps you moving forward with this passenger now that's accompanying you on your journey of life?
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I wrote about it at some point that I was I was imagining myself that I walked down a mountain path, a narrow path, and then you're walking beside yourself.
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And at some part some at some point the, you have, you fell overboard and the other, you grabs your hand and clings to you.
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And I use that for myself to to have this, you have two choices now you can clinging to, to the old self who is hanging outside the cliff and risk of being, getting tired and fall with him.
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Or you can take that sorrow, who will come if you just let go?
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Of course there, there's sorrow.
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Of course there's a new situation, a new day you have to live by, but you're saving.
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The best part of yourself, the strong part.
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You're saving a part where you'll be able to make a new version of yourself.
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And that was my mantra, if you could.
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I kept thinking on that, that I did not want to live my life where I felt that my disease was the master.
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I, I did not want to live like that.
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And especially looking at my wife and my two small kids I also thought that I owed them.
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To try my very best to actually keep moving forward.
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Yes.
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And you're doing a great job of that for sure.
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I'm wondering what you feel like some of the skills you've developed, you've spoke to it a little bit already, but like what do you feel like has improved your ability to live well with pain?
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Like are there any key things you do on a day-to-day basis that help you manage the pain?
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I know it sounds like accepting some of the difficult emotions and struggles that come with the illness.
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Anything else that you feel like has been especially helpful for you?
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Things that you employ on a regular basis that help you continue to navigate things well moving forward.
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We, it is very important for me and also my wife that we have a total open communication.
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So we are able to say if it's a bad day or a good day, and also her because to live.
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With someone with a chronic ill illness.
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She works a lot as, as well.
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So it, it goes both way.
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But just, starting every morning for me and my disease, these attacks I get, they almost always come during the night.
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So for the past five, six years, I sleep.
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Two to three hours a night at maximum.
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So my mornings have to be very slow and and.
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I would rather get up an hour earlier just so that I actually can get this quiet morning before the kids wake up and then we have to get them ready and so on.
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So it's a lot of small things but, but I just think that when you have a schedule as I have to have in my head that I have to do this in this order.
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It helps me.
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Are there days where I'm not able to do anything?
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Of course, but who hasn't?
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So, so I think the small things, the small things that you do during the day to just be okay, if that makes sense.
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Definitely.
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mentioned the relationship component with your wife.
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'cause I think that's often a key component as we work with people with pain is.
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Obviously helping the person with pain understand and connect the dots and better manage their situation.
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I'm wondering how your wife has had to adapt and adjust, and like you mentioned, your communication has been so key with that as far as keeping that open line of communication.
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It sounds like that relationship has been very helpful to, to get the support and a mutual support that you both give each other to to navigate this new situation forward.
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I'm wondering if you could speak to.
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How that relationship component for somebody who's dealing with a chronic illness is important.
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If I think that if you are in a relationship or where you have a partner you have to have this open communication because she had to, she also had to get a new day.
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Because of my chronic illness.
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And I think it's very important that we acknowledge that it's also hard for her.
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We, we had to move on a positive note.
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We moved closer to her family.
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So we had more people around us who, who can help with the kids and they day-to-day things but also.
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Although we are lucky that we live in a country where I get paid to stay at home.
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She had to take another job where she has to work more than she did before.
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So we can afford everything.
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And so it's a brand new thing for her as well.
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And I think that we both spent.
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Time with each other to just acknowledge both sides of this.
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I think that's one of the reasons that, that we, we keep having this great relationship but also we have that communication where you can say anything.
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You, you will never get judged by anything at all.
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When talking about these day-to-day things.
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And I actually think that is one of the.
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Big keys to to make it work.
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Because I hear unfortunately that a lot of spouses, they, they lack the understandable both ways.
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And it, everybody just get tired.
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So I, I think that you have to just make a Yeah, we can we call our home a safe space.
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No, nothing.
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You say can can or will be against held against you.
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You speak to a lot of the things that, we see where, you know, the relationship dynamics of understanding both sides, like you mentioned, where the person in pain, but also the person who's, in the relationship with the, and the people surrounding the person in pain can have a positive or negative impact depending on how that interaction is.
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And it sounds like you've, you two have, and your family have come with a good, supportive relationship, so that's great to see.
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I'm wondering if you.
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Could put yourself in the shoes of somebody who's in the early stages of your journey, maybe with this life altering illness that's striking them, such as your chronic headaches.
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What do you think is key for them to hear when they're in this new situation that would help them hopefully navigate a path that can be more fruitful and with less?
00:16:00.581 --> 00:16:01.302
Is minimal.
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'cause obviously with these illnesses it's, I'm sure you can reflect there's some pretty rough days that are probably in your history.
00:16:07.701 --> 00:16:13.251
But I'm wondering what you'd want someone to hear who's just starting to have some of the experiences that you had years back.
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We understand you.
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We know you're struggling and some days it's shit to say it on the rest.
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It is just horrible.
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And you have to, the first thing you have to learn is to close your ears, to all the advices you never ask for because there will be a lot of those.
00:16:34.121 --> 00:16:43.922
And I always think that when people give me advice, I have, government people also who has asked if I just tried, to take a couple of pills and just work through.
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So I think that if you just close your ears and then pretend I think, I hope, and I think that everyone who gives me advices and my ill illness, it's because they care and maybe they don't understand the disease or the illness that, that you have.
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They do it from a good place of heart.
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And if you remember that and then just know that we do know that it is a incredible, painful journey to start.
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And the key element here is to just.
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We know it's hard, but don't give up because it will get better.
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You, it is possible to actually find some balance in, in your in your life in spite of having a chronic illness.
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Kind of to piggyback on that a bit, healthcare professionals you've had a good journey from what you're sharing with us, which is great.
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I'm wondering.
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What you would want healthcare people to know and to understand when they're encountering somebody who's in the initial stages of your journey to help to best help them navigate a very difficult journey.
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For me personally, I can see that there is an, there's a thing that I, myself feel like I've been much better at now with, especially with hidden diseases, and that's the empathy.
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I actually can.
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Put myself in the shoes of people who battle chronic illness and a lot of times of healthcare professionals and all that.
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The reason I was so happy was because I for I will say that I think I am pretty good at, in my native language.
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I'm pretty good at speaking but I'm good to just never afraid to just tell them how I felt.
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How am I today?
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And I think that's the first thing.
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And then the healthcare professionals that I've been most happy about was those who just sat down, looked me in the eye and just said, hear you just tell me everything.
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And then actually listened.
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Because listening is 85% of it all because you, if you feel you are hurt, then I also think it makes it easier for the healthcare professionals to actually find a treatment who would actually work with this individual if we actually listen to what they're saying and not just reading that headline who said, cluster headache.
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Then you have this.
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So for my for me it's absolutely that.
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And they were amazing at it.
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Most of them I encountered were just simply amazing.
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The listening component comes through time and time again when we have these conversations and.
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it sounds like in, in Denmark and where in your encounters, in, in some spots here in the states too.
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There's the space for that story to have a stage.
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And I think I'm fortunate as in physiotherapy, and then those who are listening who have that time to sit down and validate and just listen, which is such, seems so basic.
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But for, and sometimes there's systemic constraints I recognize too.
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But.
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I don't know how is healthcare systems and people say, well, I don't have time.
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Well, we need to give, get these people time.
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If you can't give it to'em, then give it, find somebody who can and not just, getting people disjointed stories and not giving them the time to express things and, probably creating more of a difficult journey because of some of those constraints.
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I think we can do better, but I'd like to get into a little bit of your new direction.
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That's how, obviously I met you as far as what I your involvement with.
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Mathilde's pain coach community.
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I'd love to hear what your kind of aspirations are when it comes to your, some new goals you have and maybe new directions of where careers or your vocation's gonna go.
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Where are you at with the pain coaching and where do you see that fitting in with you?
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I can see now that I slowly am creating a network and I have.
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On a quite regular basis.
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