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A Teacher’s Experience Navigating Chronic Pain: Shrewsbury High School

“Pain for me is sometimes a sharp, tearing feeling or sometimes a dull ache that just drags me down, makes me irritable and exhausted.

I have had chronic back pain since I was in my twenties.  I manage it through lifestyle, chiropractic, and dietary choices, but about once per year it flares up and ‘goes out’ and I am so limited in my movement and ability to do simple tasks like drive, bend over to pick something up, etc.

I have accommodations for another chronic condition which involves painful eye redness, swelling, discharge, and pain. I’m allergic to something in the school and triggers it, so I have to have an air purifier in the room I’m teaching in, and I cannot be in the media center for any length of time (it’s full of mold, or something that triggers this horrible reaction in my eyes). So far, it’s been effective keeping me in my room with the air purifier for all my classes and my duty.

Although my pain is only intermittent, I do understand how pain can consume you, leaving very little space for anything else in your life.  How could I expect my students who are unwell or in pain to concentrate on learning when they are consumed with illness and/or pain?

I always tell students that their health is the most important, and I truly hope that I provide students with grace and flexibility with their makeup work.

I have found SHS supportive in allowing teachers some autonomy on handling make up work.”

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A Talk With Family: How Does MS Affect Daily Life?

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A Talk with Family: How Does Multiple Sclerosis (MS) Affect Day-to-Day Life?

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What is the PPRC?

Exploring the role of Clinics, like Boston’s Pediatric Pain Rehabilitation Center, in Pain Management

https://www.mayoclinic.org/departments-centers/pediatric-pain-rehabilitation-center/sections/overview/ovc-20574250

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[Dr. Rabatin] I think a lot of kids get told, "This is all in your head." You know, I'll tell them, "It is in your head 'cause that's where your brain is. That's where that pain signal's coming from."

[Laney] I played competitive hockey for about eight years. I remember falling and just not really being able to move. I got checked against the boards just hard enough to cause problems. Everything that I had to do, so schoolwork, studying, it was all in bed because it hurt so bad.

[Jesse] I'm an Eagle Scout, and I was really into school band. I started experiencing a lot of sleep issues and that led into me experiencing more depression and pain and things like that, and it just kept spiraling and it didn't really feel like there was an end point.

[Dr. Harbeck-Weber] I think when people come in, they've been part of the medical system for a while, and they've tried lots and lots of different interventions, whether that be surgeries or several medications or massage or physical therapy. They often have gotten the message that their pain is hard to understand, and maybe people don't always believe them.

[Jesse] When I was talking with doctors and I mentioned that I wanted to go to college, it seemed almost as they took it as a joke.

[Dr. Rabatin] Your symptoms are real, your pain is real, but it doesn't have to be your new normal. Many of our patients come to us saying, "I want my life back. I haven't been able to do the things that I enjoy, the things that bring me hope, the things that bring me meaning." I view it as a place to restore function, to get your life back. Changing all of those, like, "I can't, I can't, I can't, I can't," to, "I'm just not there yet." (spirited music)

[Laney] I had so many doubts, and all the doctors sat me down and I just said, "I don't get it," and they explained it to me step-by-step and why they do everything. I felt like they were talking to me as an adult and not just a subject or a patient.

[Dr. Harbeck-Weber] When people come in and they are willing to learn the science and then try to do things differently, they find that they're able to do more than they thought they could.

[Jesse] Mayo brings you in to teach you skills and strategies as a community to pull yourself out of whatever hole it feels like you're trapped in. It's just three weeks of my life, it's such a small thing on a grand scale, and so my biggest goal was just to be genuine with the program.

[Laney] It was really a working system that's like they're all working on different things, but they're all working kind of in unison.

[Dr. Harbeck-Weber] We have a big variety of professionals who all work together to support the patient. We have medical providers, we have psychologists, we have nurses, we have biofeedback providers, physical therapists, occupational therapists.

[Laney] It really amazed me because about a week into the program, my parents started to notice a difference. I didn't see it in myself, at least not at first, but I could see it in the other people I was with, and I was like, "Wow, like, this really is working!"

[Jesse] It reminded us that we're people, that we're kids, we're not just a medical problem that needs to be solved, and thanks to biofeedback, I'm able to just ground myself and breathe. I was able to see myself at peace for the first time in years. (gentle music)

[Dr. Rabatin] Success looks different for every patient. We could say, you know, a successful patient does this, this, this, and this and this. We'd be wrong. Success is whatever those goals were. Success is gonna be, "I have the tools to continue to grow, to continue my return to function, to continue developing and getting back to the things that bring me hope and meaning."

[Jesse] PRC helped me to transition straight from the program back home for three days to pack and immediately go to college.

[Laney] Hockey would be on the list if I were to describe who I was now, but it wouldn't be at the top. I still enjoy playing, I still love being active. I'm a social butterfly, I love pushing myself out there. I love trying new things. I'm a completely different person. (gentle music)

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Pediatric Pain Rehabilitation Center - Overview

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Pediatric behavioral, physical and occupational therapies to help adolescents with chronic pain and symptoms restore function and improve quality of life.

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My Interview with Dr. Sethna: Chronic Pain Specialist of the Pediatric Pain Rehabilitation Center of Boston Children’s Hospital

In your experience, what are the most common causes or triggers of chronic pain in young people?

The most common causes are

Acute and chronic illnesses

(1) infections such as a) viruses; examples respiratory viruses causing flu, sinus infection, stomach bugs, COVID-19, etc. b) bacterial infections, sore throat infection, UTI, Lyme disease, etc.

(2) Irritable bowel syndrome; disturbances in gut bacteria.

Genetic susceptibility

Injury/trauma to tissues: muscles, joints, and nerve injuries, bone fractures, ligament tears, concussion, surgery, needle injury such as intramuscular injection causing nerve injury, sports injury, etc.

How do you determine when to refer a patient to physical or psychological therapy for chronic pain?

When patients are unable to function physically due to pain-related fatigue, i.e., carry out daily tasks, move around, get out of the house, care for themselves [brush teeth, shower, dress themselves, go to school, lack of daily aerobic exercise, etc.  Even healthy adolescents (and adults) need a minimum of 30 minutes of physical activity (such as walking outdoors, a dance video workout, muscle-strengthening exercises, going to a fitness center, swimming, etc.) to keep their bodies and minds healthy.

Patients are referred to psychological therapy to learn coping skills, how to deal with pain and stress, so that pain does not get in the way of daily life. Chronic pain causes physical and mental stress leading to anxiety, depression, difficulty with sleep and mental fog [difficulty focusing, paying attention and remembering]. If the patient has had anxiety, depression, PTSD, learning difficulties, ADHD, etc., chronic pain worsens these conditions.

What challenges exist in diagnosing and managing chronic pain in adolescents?

The biggest challenge is that we do not yet have diagnostic tests such as blood or tissue tests, imaging studies [X-rays, MRI, CT-scan, etc.] because the chemical changes occur in the nervous system at a microscopic level and cannot be detected by the available diagnostic technique, but this may be in the future.

What is the role of nutrition in chronic pain? Are anti-inflammatory diets, or any kind of diets recommended?

Obesity is known to increase the risk of developing or worsening chronic pain in adolescents and adults especially muscle and joint pain.

Anti-inflammatory diets are help when the patient’s pain is caused by inflammatory causes such as juvenile arthritis, IBS, celiac disease, Crohn’s disease, ulcerative colitis, autoimmune diseases, etc..

Studies have not shown that any specific diet is effective for reducing pain in patients without inflammatory conditions.

To keep the body and mind healthy, the best diet is the NORMAL BALANCED diet that consists of a lot of protein and less of fat and sugar. A BALANCE diet containing what the body needs daily including protein, fat, carbohydrate, vegetables, and fruits. Avoid PROCESSED food of meat, vegetables, fruit, and refined sugars because these processed foods can cause metabolic imbalance and metabolic diseases such as diabetes, heart problems, etc.

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Paige: Occupational Therapy at the PPRC

What are the Barriers in supporting students with chronic pain?

Students with chronic pain often face a range of environmental barriers in school settings, including bright lights, loud sounds, strong smells, and other sensory stimuli that can intensify their symptoms. In addition, the inherently busy and fast-paced nature of school schedules can make it difficult for these students to keep up, contribute consistently, or find the breaks they need to regulate their pain.

How can schools and healthcare providers can work together?

Schools and healthcare providers can improve support for students with chronic pain by collaborating to create strategies that help each student participate in class as fully and consistently as possible. This partnership should emphasize maintaining engagement in meaningful school activities while adapting supports so the student can remain included, productive, and comfortable.

What is some advice for teachers and school nurses?

When supporting a student with chronic pain, teachers and school nurses can help by limiting conversations that focus directly on pain and instead asking questions like, “How are your classes going today?” to keep attention on participation and daily functioning. Building in natural pacing breaks, incorporating movement throughout the day, and validating the student’s experience are all essential. Equally important is guiding the student in how to return to activities in a supported and sustainable way.

If you were to redesign the school system to be more pain-aware…

A more pain-aware school system would begin with early identification of students experiencing chronic pain and the development of individualized plans long before their symptoms lead to significant dysfunction. Proactive planning would allow for smoother accommodation, better communication, and earlier support that helps prevent academic and emotional setbacks.

What is some advice for schools or families?

For schools and families working to support a student with chronic pain, a key priority is building the student’s self-advocacy skills so they can communicate their needs confidently and effectively. Additionally, providing education about chronic pain—both to the student and those supporting them—helps create understanding, reduces stigma, and promotes consistent, supportive care across environments.

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Dr. Randall’s Experience as a Clinical Psychologist Specializing in Chronic Pain in Adolescents

https://youtu.be/dlIUVHwDhP8

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A Psychologist’s Perspective: Chronic Pain in the Mayo Clinic PPRC

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Erica’s Experience: PPRC Physical Therapist

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An Interview with the School Nurses!

https://youtu.be/GL2Wr8EY4VY

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A Talk with The Nurses! What Does Chronic Pain Look Like in a School Setting?

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Deva’s Experience Helping those with Chronic Pain Through Recreational Therapy:

What inspired you to specialize in chronic pain management?

When I began my career, I did not know about chronic pain. It wasn’t until I started working at the PPRC that I got education on chronic pain and the effects it has on those living with it. The education has helped me grow within my profession and has helped me help those with chronic pain return to preferred leisure activities or to engage in new leisure activities of interest.

What is the role of therapeutic recreation in chronic pain management?

The role of therapeutic recreation within chronic pain management is to assist the patients to get back to their preferred leisure interests or to explore new leisure activities of interests while incorporating pacing and coping throughout. It allows the patient to identify what is meaningful and fulfilling to themselves and helps them to discover their potential. Therapeutic Recreation also assists with community (re)engagement, whether that be job exploration/applying, volunteering, or researching school clubs and organizations to participate in.

Why do you have to pace fun/preferred activities? Can you still boom-bust with leisure?

Pacing is important when engaging in preferred activities because it will allow the individual to engage in the activity for a longer period of time, whether that be crocheting, playing sports, or crafting, etc. An individual can still boom bust when engaging in leisure activities, that is why pacing is so important.

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Instagram: Beyondtheacheproject

https://youtu.be/pTikalCAGXs

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Pain isn’t Pretty: Launching @Beyondtheache  On Instagram

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Ace- Carpel Tunnel/Hypertension/Hypermobility

1. Sharp pain in the entirety of my lower back and my hands, sometimes my back hurts so bad I don't want to do anything for the entire day. I was Diagnosed with Carpal tunnel and Hypertension/Hypermobility in my lower spine

2. My Peers would tell me that I am too young to be having these kinds of pains and that I sound like/ look like an old man. They also thought my back hurt because of my mattress and refused to take me to the doctor. My mom told me when she heard that I had Carpal tunnel that she would have to take my phone away implying that the only reason my hands hurt was because I was holding my phone in weird positions for too long.

3. Sometimes I wake up in pain from my back or my hands and often have to wear braces to bed to make it comfortable enough to fall asleep. My back pain has gotten so bad once I had to call out of work because physically I could not get out of bed without being in pain.

4. I go to physical therapy two times a week for my back and I do stretches and wear braces to cope with the pain.

5. I am supposed to collect carts at my job but it often makes it difficult with the constant twisting in my wrist and back, also like I said I had to call out once.

6. my relationships are not really affected, they just don't really understand the gravity of my pain.

7. Carpal tunnel is common with guitar players but I'm too passionate about it to quit.

8. Its not just older people that have these pains, younger people can also feel this way and we shouldn't make them feel bad about it

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Shelby: Muscle Pain

1. The pain varies from day to day. Sometimes it feels like my shoulder is just being torn apart by the muscle, but other days it could be a dull throb. Emotionally, it’s gotten better over the years, but at first I thought the emotional effect was worse than living with the pain itself. I’ve had to change my day-to-day life to accommodate it and in some cases I just had to completely give up on something. Since I’ve had chronic pain for a long time and I’ve been able to grow with it, the emotional impact has lessened but sometimes I think of what life could have been or could be, and that’s just the worst of it.

2. Living with chronic pain changed how I view my physical capabilities and how far I want to push myself. It’s changed me from wanting to pursue what I actually wanted to do in life to settling for the second option, which definitely became apparent in how I conduct myself in life. I’ve stopped striving for what I really wanted and simply just went for whatever was easier, a habit that is utterly destructive. Not only did I stop striving for what I wanted, I started being obsessed with my grades. I was so limited in what I could do physically, I felt like I had to prove myself by being top of my class.

3. While chronic pain is more common than how my doctor made it seem, surprisingly I haven’t met anyone who shares something similar to me even if they also have chronic pain. The pain is centered in my shoulder, but I’ve really only met people with pain in their knees or lower body so they always have vastly different experiences than I do, making it harder to actually feel like someone understands it. However, the misunderstandings run rampant. One time, I was telling someone about how I struggled to do a little bit more of a basic task and they brushed it off saying I was overreacting or it was all just a mental issue. Which did not help anything at all, but it was such a common comment that after a while I stopped caring.

4. One thing that was absolutely devastating when I started having chronic pain was giving up competitive swimming, and for a while swimming in general. I couldn’t do it for as long or as fast as I used to, and I went from winning competitions to basically learning how to swim again. I practically gave up my dream just because I couldn’t perform at the level I needed to be at and I’ve never been able to reach that level since then.

Coping and Daily Life:

1. I do take over the counter pain meds for it and I am on track to get prescription meds, once my doctor agrees to actually prescribe them. The meds help on days where it’s not that bad, but if it ever gets worse, it doesn’t really do much. I was in PT for awhile, but the most it ever did was make the pain worse the next day so I eventually stopped. Honestly, most days when it’s manageable (relatively speaking), I take meds and ignore it or try to limit how much strain I put myself under.

2. Chronic pain completely altered my career path, bringing me from being on track to be a professional swimmer, to looking at less physically demanding careers. I’ve settled on psychology, which is still one of my top passions but will never compare to what I wanted to do in life. This change also bled into academics, changing my sights in class from barely passing to only being the top in the class.

3. My relationships always have a strong foundation, but my life has been so altered from a normal life because of my pain that sometimes newer relationships come under strain. I can’t do the most adventurous things people my age might want to do and I might need extra help with daily tasks, which especially tests relationships. However, several of them, more long-term relationships, have adapted as well, whether it be people offering to help or being understanding when I’m not always sunshine and rainbows. A few people have opted to become more helpful, but I ask for help so often that people sometimes get frustrated or angry.

4. I’ve been able to keep a few hobbies and passions, like reading and storytelling, but I’ve had to give up all sports and the majority of my hobbies. One hobby that I haven’t necessarily given up is writing, which I still do, but is significantly harder to do for long periods of time. After a while, writing begins to cause a significant flare up in my shoulders, whether it be from posture or straining it too much. One hobby I completely gave up was crotchet. Surprisingly, I learned this the hard way, but crotchet uses a lot more shoulder muscles than one would expect. I learned that through my initial recovery from the injury that caused the chronic pain, and I’ve just never been able to crotchet beyond just a few chains.

5. Something I wish more people knew about living with chronic pain isn’t just pain, it’s a reinvention of a life that sometimes can never be changed and all it takes is just a little bit of understanding.

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https://www.youtube.com/watch?v=rmwvrmA96lc

Exercise Induced Analgesia

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Lili: Chronic Menstrual Cramps

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Vansheeka: Chronic Leg Pain

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Hena Interview: PCOS, Vitamin D Deficiency, and Chronic Fatigue

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Let’s Talk About Pain: PCOS and Chronic Fatigue

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Ghena- Migraines

1. the headaches are really intense and sometimes it just makes me upset because it’s difficult to do the things or chores I need to do

4. i often have cant stay outside long on intense sunny days which is kinda upsetting because not only do I get hot but also in pain

1. (how I cope): drinking water and eating or relaxing/sleeping don’t fix it but they do help make it a little more bearable

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Crew member (M): Menstrual pain

This pain is very present in my life. Every month, I dread starting it because I know the pain that will come for the next few days. I feel tired all day and I have no appetite. It is hard to focus in school because the pain will suddenly cause harsh cramps. This pain also makes me feel down and less likely to want to hang out with my friends.

During the sports season, it would cause me anxiety. When I get my cycle, I cannot even do practice without some sort of painkiller, but even that doesn’t take away all the pain. It causes me to be tired as well. This made me unable to perform as well on erg tests, which were spontaneous and decided whether or not you would race with the team. It wouldn’t matter if I had my cycle with pain, I just had to deal with it because during a race, you just have to deal with it. There were many times where I felt I could have done better or had more chances to race, if it was just during a different time of month. This made me feel horrible because I wasn’t doing well, but then I have to realize that it is not my fault. I didn’t choose the pain and I try my hardest despite it, and I should be proud of that. I wish people would know that and understand that many women, unlike most men, cannot be at their best physically all the time. And that it is ok.

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Ray: Ankle Pain

1. Can you describe what your recurrent/chronic pain feels like, both on a physical and emotional level?

Physical- recurring sharp flashes of pain in right ankle.

Emotional- Angry and Annoyed from the reality of it

2. In what ways has living with chronic pain changed how you see yourself or your identity?

Not much, at the most it makes me angry. Mostly because I know that it’s from not letting it heal properly.

3. Have there been moments when you felt truly understood or truly misunderstood in your journey with chronic pain? Can you share what those moments were like?

At first I thought that my ankle was still injured and it caused me to spend a lot of time missing out on things in an effort to let it heal.

Eventually, I did realize that it was healed. But the constant use caused phantom pains to flare up during random intervals. Figuring out that it was more the emotional trauma helped me understand it more.

4. What have you had to let go of or reinvent because of your pain—and how has that affected you?

I needed to stop tap dancing. At first it made me angry and upset. But I didn’t really like tap anyway, so it was more the unfairness of the situation.

I also can’t run well, which makes me feel unhealthy and incredibly insecure (…especially during the pacer test!)

5. What therapies, treatments, or personal coping strategies have helped you most—and what hasn’t worked at all?

I’ve never really had a therapist specifically meant for help with my chronic pain.

I used to take a lot of painkillers to deal with it, since it’s emotional though, it never worked. As for personal coping strategies, really the only thing I can do is stay off my foot when it starts to hurt. Sometimes a light massage helps.

6. How has chronic pain impacted your work life, career choices, or educational path?

It hasn’t, not really.

7. How do your relationships (family, romantic, friends) adapt or strain under the weight of chronic pain?

Since its brief, there’s only a couple of moments where my family have had to deal with it. Generally all I need is to take a break from standing for a moment or two.

8. Are there hobbies, sports, or passions you’ve been able to keep—or had to give up? How do you feel about those changes?

Tap dancing. It made me angry.

Running. Never really liked it, so honestly the excuse made me happy.

9. What’s something you wish more people understood about living with a chronic or recurrent pain?

I wish more people knew that it can be caused by the emotional impact of an injury.

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Levy: Tremors

1. I have constant tremors throughout my body. I have no control over what part of my body shakes but it is mostly my legs. It makes me feel weak and I am often in pain when I shake. Sometimes it becomes difficult to do simple tasks. I am often emotionally drained after a long day of dealing with tremors.

2. I often feel very weak throughout the day. sometimes I struggle a lot with it and it takes a toll on my mental health. In some aspects I guess you can say I'm disabled. I am not supposed to climb any sort of stairs or walk for too long because of how my tremors affect my balance.

3. It is frustrating not knowing the cause of my tremors. not being able to do things like write or draw when needed is infuriating and often holds me back from doing what i am supposed to do. Sometimes i can't complete assignments on time for my tremors because i can't control my limbs.

4. I can't draw that often or stand for long periods of time anymore. which is saddening but i try to make the most of it. I often try to push myself but when i can't i can't.

Coping and Daily Life:
1. I did some research on ways of lessening tremors and what is helping is drinking tea, massaging the places where tremors happen most often, relaxing, and making sure I'm eating enough. none of these have really changed much but it helps sometimes. Stress also increases my tremors so I try to remain relaxed and calm.

2. I can't do most jobs that require me to stand for long periods of time so I try to make it work. I still need to push myself though and plan on going to physical therapy to see if that helps. it'll be easier once I figure out what is wrong with me.

3. Sometimes I need help to do things and it can be worrying at times. sometimes i need someone to help me walk from place to place, other times i figure it out myself. i try to be as independent as possible. i hate having to rely on others because im incapable. sometimes i end up pushing others away but i try not to. some people just dont understand what im going through.

4. I can still read, draw, play video games, sing, crochet, and other things. I just require more precision and more control. I can't run anymore though, i dont like that i cant run but it's okay. I can't still do things, i just need to accommodate myself.

5. I wish people understand that I'm not fragile, I just need time to adjust.

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Karina: Ankle Injury

1. The pain feels like a deep ache and burning right at the back of my ankle, especially when I point my toes or jump. Emotionally, it's frustrating because it holds me back from pushing myself in cheer. I get anxious before practices, worrying if it will flare up.

2. Impact on Identity: It's made me question my identity as a strong athlete. I used to see myself as someone who could always push through, but now I have to consider my limits. It's tough because cheer is a big part of who I am.

3. Understood/Misunderstood: My coach understands when I need to modify a skill, and that's a relief. But sometimes, teammates think I'm just being dramatic, especially when it's not visibly swollen. That's frustrating because they don't feel the constant ache.

4. Letting Go/Reinventing: I've had to let go of the idea that I can always go full-out in every practice. I've had to reinvent my training to focus more on strengthening and flexibility to support my ankle, which is boring but necessary.

5. Helpful/Not Helpful: Physical therapy exercises, especially calf raises and stretches, help manage the pain. Icing after practice is a must. Complete rest is the worst, it makes it feel stiffer. Painkillers only mask the problem.

6. Impact on Cheer: It's made me more strategic about what skills I focus on. I have to be careful with jumps and landings. I've learned to communicate more with my coach about what I can handle.

7. Impact on Relationships: My family is supportive, but they don't always understand the intensity of cheer. My friends on the team get it, but sometimes I feel like a burden when I can't participate fully.

8. Hobbies/Passions: I've had to scale back on high-impact activities outside of cheer. I miss running, but I've taken up walking longer distances and workout out to stay active without stressing my ankle.

9. Wish People Understood: I wish people understood that chronic pain isn't just a physical thing. It affects your mental state and your ability to live your life to the fullest. It's not something you can just push through.

All of my answer only pertain to my ankle issues but I also deal with jumpers knee which further affects my performance.

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Leah’s Mother: Chronic Migraines

My pain is related to Chronic Migraine (having more than 15 episodes a month). There wasn’t a medicine approved to specifically treat migraine until 2018. Before then, any medicines used to prevent/treat migraine episodes were secondary “off label” usage. My life before/after these medicines is dramatically different and changes my answers below. I’ll refer to both.

Can you describe what your recurrent/chronic pain feels like, both on a physical and emotional level?

Before the newly approved anti-CGRP medicines, my migraine episodes lasted about 20 days a month. Now that I take a monthly injection (Emgality), the episodes are reduced to less than 5 a month! There are both physical and neurological symptoms. When I have a migraine, I have intense pain on the left side of my head, neck, and upper shoulder. I cannot tolerate light or sounds as it makes the pain much worse. I also have intense nausea and will vomit. Neurologically, my speech becomes impaired and word recall is affected. I will also get a little clumsy. I have aura with most episodes. That shows as roaming blind spots and wavy lines in my vision. Emotionally, it is very taxing. Knowing that life passes by while I have to “hide away” is very difficult. It’s hard to accept that my body is doing something to hinder my life and I have no control over it. I have environmental triggers and am always “on guard” to try to keep them away. Also, this chronic condition isn’t seen by others and it can be hard having an “invisible” ailment.

In what ways has living with chronic pain changed how you see yourself or your identity?

I have had to come to terms with the fact that I cannot control this aspect of my life.
Have there been moments when you felt truly understood or truly misunderstood in your journey with chronic pain? Can you share what those moments were like?

My family and close friends have been very supportive. When I have an episode, I need to stay in a dark room for 4-7 hours. That means that my husband has had to take over all parenting duties when our kids were younger. Now that they are older, it means they can help out. One way in which I have felt misunderstood is when someone hears about my migraines and responds with, “Oh, I get headaches, too.” Migraines are WAY more than “just” a headache. Those comments can feel insensitive and minimize what I go through.

What have you had to let go of or reinvent because of your pain—and how has that affected you?

I have had to learn to be ok with last minute change of plans and learn to be ok with having a weakness.
What therapies, treatments, or personal coping strategies have helped you most—and what hasn’t worked at all?

Before the anti-CGRP medications, I took a plethora of off-label medications. I have been prescribed barbiturates, seizure medications, blood pressure medication, and antidepressants. All of these medicines can help prevent migraines but not ever fully. And as they start to wear off, drs increase the dosages and that brings many unwanted side effects. The seizure medicines have permanently changed my brain and my word recall ability. Other than medications, managing my sleep and stress level have had the most beneficial effects in prevention.

How has chronic pain impacted your work life, career choices, or educational path?

I have had to leave work many times. When I try to work through the pain, I can make mistakes.
How do your relationships adapt or strain under the weight of chronic pain?

My family has had to fill in the gaps when I have an episode. I’ve also missed out on family events. They are always supportive, but it’s sad to miss things!

Are there hobbies, sports, or passions you’ve been able to keep—or had to give up? How do you feel about those changes?

A high heart rate has become a trigger so I’ve had to stop running which I used to love. One hobby I’ve been able to keep is working outside in the yard. It’s a great way to reconnect with nature and see beauty. It’s also convenient that I can do it on my schedule/ability.

What’s something you wish more people understood about living with a chronic or recurrent pain?

I wish people understood how all-encompassing chronic pain can be. It goes way beyond physical pain and expands into relationships, ability to earn wages, and social engagement. Without a supportive network of family/friends, it can become very oppressive and depressing.

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Discussion Questions:

Digging beneath the Surface:

1. Can you describe what pain feels like, not only on a physical level, but emotional as well?

2. In what ways has living with chronic pain changed how you see yourself or your identity?

3. Have there been moments when you felt truly understood or truly misunderstood in your journey with chronic pain? Can you share what those moments were like?

4. What have you had to let go of or reinvent because of your pain—and how has that affected you?

Coping and Daily Life:

1. What therapies, treatments, or personal coping strategies have helped you most—and what hasn’t worked at all?

2. How has chronic pain impacted your work life, career choices, or educational path?

3. How do your relationships (family, romantic, friends) adapt or strain under the weight of chronic pain?

4. Are there hobbies, sports, or passions you’ve been able to keep—or had to give up? How do you feel about those changes?

5. What’s something you wish more people understood about living with chronic pain?