I’m Haley, I’m 22 years old, and I was diagnosed with chronic pain at age 14. I tore my ACL during soccer practice and had to have reconstructive surgery; I was supposed to walk out of there, but I spent then next two months on crutches. Even though there was nothing wrong with the new ligament, the pain continued and spread throughout the rest of my body. There were days when I couldn’t move, let alone walk, and I had sympathy pains in my other knee, my ankles, my hips, my back, my hands, my wrists. I had migraines and cluster headaches nearly every day for four years. It just took over my life.  

What helped the most was leaving home for college. As difficult as finishing high school was, college was so much easier because the stress was all-consuming. I had to be here. I had to be there. I was running the school’s lit mag, working multiple jobs, making straight-A’s, and ruling my own life. I didn’t have time for my hands to hurt, or my head, or my knee. I got better and better at shutting it all out. It never went away–I still have migraines, I have sciatica, carpal tunnel–but I also have a job to do and a drive to be better.  

Now that I’ve graduated college, I’m moving to Texas and will be applying to MFA programs in a year or two. In the meantime, I want to explore my new home, set up a painting studio in my garage, and work on my novel. I’m going to adopt an Australian Cattle Dog and plant a garden.  

My advice to other people suffering from chronic pain is that all this too shall pass. Don’t push past it, don’t push it away, don’t accept your pain; acknowledge it, call it a name, then move on. If you can’t go back to what you were doing before, do something else. If you need to take a break or the rest of the day off, that’s fine, too. But during that break, don’t focus on the pain that caused it, but the fact that you are now doing something you enjoy–watching a movie, eating a treat, taking a bath. 

I want other people to know that I’m in near constant pain and my pain is different all the time. Sometimes it’s a migraine, sometimes it’s muscle spasms, sometimes it’s sciatica. If I don’t talk about it, it’s not because it doesn’t affect me, but because I don’t want to talk about it. Just because it went away, does not mean that I was faking it before; I might just be faking being okay. Don’t tell me to push through because I know my limitations and I’m the one who has to live with the fallout, not you. I’m not in pain because I want to be; if you’re frustrated, think how I feel. My life is not yours, my pain is not yours, but you can keep your opinions to yourself. Thank you, no thank you. 

My name is Ana. I am the mother of 2 daughters, both diagnosed with chronic pain at age 14. We took them to tons of doctors, but none could figure out why they were feeling pain all the time. It felt like being stuck in a dark pit, and we were scared. We finally got a sense of control when we got in to see Dr. Zeltzer and she started the therapies which caused everything to slowly improve. With my youngest, we didn’t think lightning could strike twice, but when she wasn’t making progress after a surgery, we got her to Dr. Zeltzer and she improved with the therapies.   

 
My children are now 22 and 25 (one just graduated from college as a writer, the other is a therapist). 

One child uses art and yoga as her creative healing – the other uses cooking! 

My creative healing is playing guitar and piano, watching music videos, walking the dogs! 

My advice: Keep an open mind for out of the box therapies. They just might work.  

I want others to know that pain is real, it’s debilitating, and it needs to be dealt with — patiently. 

My name is Jimmy. Both of my children were diagnosed with chronic pain when they were teenagers. This also included panic attacks, frequent loss of consciousness, and seizures — even dropping out of school. Many doctors were baffled and unable to help. Eventually, Dr. Zeltzer (founder) was able to help both kids with a series of therapies.  

Art helps both girls — painting and drawing. Art is their creative healing, as well as Iyengar yoga and regular exercise.  

I even have my own creative healing. Photography is a big thing (both shooting and working with the images later). Writing and traveling helps, too. 

My advice: Get up and do something, even if it hurts. Get out and be with people. 

What do I want others to know about pain? It’s coming for everyone eventually. Learn to deal with it. Don’t be ashamed to get help. If one doctor can’t help you, find another. Speak up. Talk to others and share what you’re going through. Be good to yourself and enjoy life — even when it hurts. That’ll make it feel better. 

My name is Molly and I am 21 years old. When I was eleven, I developed CRPS. My parents and I pursued a very invasive medical treatment, including painful nerve blocks adjacent to my spine that I was awake for. I realize now how traumatic this course of treatment was for me at such a young age. I did achieve remission from my CRPS, but I didn’t learn how to heal from my pain in a way that felt good to my body. In high school, I developed wide-spread chronic pain, particularly in the form of headaches that was worsened by the stress of dealing with a mental health condition that was unmanaged. I was hospitalized three times and I often felt like everything was hopeless. It was a long journey to learn how to manage my mental health, with both medication and studious self-care, but I am back to my full self.  

I firmly believe that my mental health and my chronic pain are closely tied and what helps my mental health helps my chronic pain. I am an avid knitter and crocheter and have at least three projects going at one time. I find it helpful to walk or hike on horse trails, particularly with my dog. When I start feeling my muscles tense up, a good long hot shower helps ease my pain. I’ve found that managing my mental health with self-care is key to managing my chronic pain. I encourage others living with chronic pain to prioritize their mental health, as much as your pain is in your body, it also lives in your brain. You are the expert on your pain and you should find people, particularly in your treatment team, that believe that.  

I have rediscovered how much hope there is in my life and I am very excited about my future. I am a pre-med student going into my senior year of college. I’m majoring in Biopsychology (B.S.). I am a volunteer for a crisis line and I presented C. Elegans neurobiology research at a well-known regional C. Elegans conference. I am hoping to attend medical school and become a child and adolescent psychiatrist for kids with chronic pain or a pediatric neurologist.  

What do I want others to know about my pain? Just because my pain gets worse with stress, doesn’t mean it’s something I create or choose to have. 

My name is MacKenzie and I am a sister to someone with chronic pain. It began in 2004 with my fingers shoved into my ears and pillow over my head, trying to drown out the sound of my little brother crying and throwing up in the bathroom across the hall. This wasn’t a one-night occurrence. He didn’t have the flu; he hadn’t gotten food poisoning from a bad meal. There was something seriously wrong and it would take 10+ years of countless doctors, hospitals, medications and surgeries to figure it out. Now, two organs lighter, a social life recovering and a nightstand finally cleared from pain relievers, my brother has learned to deal with his chronic pain and I’ve learned to understand it.  

When my little brother started dealing with chronic pain, I lost my best friend. We would play together until his cheeks flushed bright red and he’d shut down, lash out and hide away. Increasingly, hiding away became his reaction to the pain- isolating him from friends, family, school, sports, and me. Pain snowballed into insomnia, isolation and depression. Yet behind his closed bedroom doors, for me, his pain wasn’t real. I couldn’t see a wound and there was no direct diagnosis from a doctor so, in my eyes, my little brother was just being a little brother: faking it. Truly understanding my brother’s pain was a long journey which, at times, cost me my relationship with my brother. For brothers and sisters, communication often comes in the form of teasing and tormenting with love hidden between the pokes and jabs. With my brother’s chronic pain, we both had to learn to communicate in a new way.  

If asked what “helped” my brother the most, my answer is not the doctors, medications, or therapy sessions, it’s music. My brother learned to communicate and handle his pain through music. At night, when the pain was the worst, he would play guitar endlessly. He is now a phenomenal musician and can play any song instantly by ear. Music gave my brother control, pain relief, confidence, community and it gave me a relationship with my brother again.  

Pain is not individual. My brother’s pain trickled into all aspects of my family’s life and I am so thankful for CHYP’s work to create a community of people dealing with pain, personally or through a loved-one. I’m also grateful for the realization that mental health and physical health are intimately connected and that healing comes in many different forms. My brother’s relationship to music plays a big role in his life with chronic pain and it played a big role in reconnecting me with my best friend.  

P.S. A big shout out to  Dan Reynolds,  Jason Mraz,  John Mayer,  Ed Sheeran, and others for the songs that got my brother through the hardest times. 

Hi! My name is Marisa and I am 24 years old. When I was 16 years old, I started having a really bad pain in my back and hip. I was initially diagnosed with CRPS, and most recently lumbosacral plexopathy, but after 8 years, my diagnosis is still up in the air. Having no diagnosis can be even more frustrating for those with chronic pain, especially because we as human beings like concrete answers. We like definite answers that guide us toward a path of healing, but that was not the case for me. Over the 8 years, my treatment has been a lot of trial and error with meds, injections, alternative healing methods, etc, and it is something I still struggle with now. Some days I feel helpless. Somedays I feel helpless because those around me feel helpless. But one thing chronic pain has taught me is that one can still feel love, see beauty and be a compassionate being in addition to having pain. Chronic pain has taught me about equanimity and resilience. Amidst the struggle of chronic pain, I have become grateful for my pain…and here is why.  

 
My pain has brought me to some of the most incredible people and places in my life. I was introduced to Iyengar yoga through the UCLA Pediatric Pain team, which was essential for me after recovering from the first few years of pain flares. I met incredible teachers and experts in Iyengar yoga, which also led me to the practice of meditation. I started practicing meditation more seriously in the past few years, and it has helped me hold space for a feeling of peace and pain together. I am even in a chronic pain meditation class, where we all share that experience of chronic pain, and no one has to explain themselves. Having that community, and sharing that common humanity has been one of the most incredible elements of being in this class. We always hear about others who struggle with chronic pain, but putting a face to a name is very powerful for me.  

 
Another place my chronic pain has led me to getting my bachelors in Psychology and masters in Marriage and Family Therapy. I always knew I wanted to help people, especially other children and adolescents struggling with chronic pain, but I did not know how. I realized through my own pain journey that mental health and physical health are deeply intertwined, so I thought that working on the mental health side can help improve the physical health as well, especially for those with chronic pain. In Spring 2017, I received my Bachelors in Psychology, and in Spring 2019, I graduated from USC with my MFT. I am currently finishing an internship working in community mental health, and I plan to work with children and adolescents with chronic pain. With that said, I worked very hard, and worked alongside my pain. In my experience through college and grad school, I learned that speaking up is an important part of having chronic pain. Speaking up and recognizing my own limits is how I got through school. That is why I am so thankful for CHYP because it will give people a chance to learn how to speak up for themselves in their environments.  

 
My pain has also guided me to learning about different alternative healing methods that I use all the time such as meditation, baking, drawing/coloring, taking a nap, working out, sleep, getting outside, snuggling with my dog.  

 
As far as advice for others with chronic pain, be compassionate and kind to yourself. It is so easy to judge ourselves for having a bad pain day, for having to take extra meds, for missing out on events etc., especially as a teenager with chronic pain. With that said, my biggest piece of advice would be to cultivate compassion and kindness for yourself. Having that compassion and kindness practice has completely changed how I approach myself in pain, and I know it has done the same for others.  

There is a lot I would want others to know…1. If I don’t say ‘yes’ to doing something, or if I have to leave an event early, it doesn’t mean I don’t want to be there, I just have to take care of myself. 2. My pain, (and other people’s pain) is triggered by stress. It’s not our fault, it’s just biology. 3.I have good and bad days. Just because I am smiling, doesn’t mean I am “cured.” 

Now, hear from Sophia’s mom, Lilly! 

What helps you take care of herself? I have an amazing husband who reminds me to take time to myself. 

What advice do you have for others? Listen to your child. Let her express her frustrations, fears and concerns. Work with your child to find a solution that she can work with. Allow her to be in control of her care, empower your child! 

What do you want others to know about pain? Pain is not something you can see but it’s very real. Supporting someone with chronic pain means to accept you can’t always help them to reduce their pain. Being a listener and not someone who offers solutions goes a long way for them to feel acknowledged and cared for during times of pain. Frustration is part of the course but offering distractions also helps immensely. 

Sophia was diagnosed with Crohn’s disease in August 2013. She was 10-years old. In Spring 2019, Sophia was also diagnosed with Conversion Disorder and Fibromyalgia. Sophia has had several hospitalizations due to leg numbness, shaking and inflammation. She has been missing a lot of school and has severe body pain. 

Sophia is now 17 and has improved but the pain is still present as is the inflammation.  

Sophia sees a pediatric pain management team that includes her pediatrician, two pain management doctors, a rheumatologist, a psychologist and a gastroenterologist. 

Sophia uses medications, as well as meditation and relaxation, to deal with her pain. 

Meet Naomi! When she was 12, she was having severe pain in her groin. “After a few days of it just getting worse, I ended up in the ER and needed surgery. I had complications and required another two surgeries. After all of that, the pain never went away. It took another two and a half years for me to see a specialist and finally be diagnose with chronic pain. Those years were the hardest because we didn’t know what was wrong or how to treat it. And, my situation was CONSTANTLY doubted and that was the hardest because then I started to doubt myself.” 

She was diagnosed with Fibromyalgia, IBS, Chronic Pain Syndrome, Myofascial Pain, Andenomyosis, muscle weakness, chronic migraines, and Carpal Tunnel. 

What helps Naomi with her pain? Painting, make-up, writing, drawing, massages, heating packs, her dog, breathing exercises, baking, talking to people who understand her, cooking, watching a movie or TV show, reading, and aquatherapy. 

Naomi knows how hard it is to have others understand her pain. “Trust us — we’re doing the best we can and wish we were able to do more… more than you wish it. Pain is draining and tiring — just because we did something one day doesn’t mean we can do it again the next day,” she says.  

Naomi wants people to know, “You are NOT alone. Try and share how you feel with people you trust. Take things one day at a time, as cheesy as it sounds, it works.” And, lastly she shares, “Use your experience to help others.” 

Here is a message that Naomi has written for chyp! 

My name is Naomi, I’m 18 and I’ve dealt with various Chronic Pains since I was 12. It started when I had an ovarian torsion and spiraled downhill from there. It took almost 3 years for me to make it to a pain specialist and get diagnosed and those 3 years were the hardest.  Because we didn’t know what we were dealing with we couldn’t treat it and people started doubting my situation. Doctors, friends, family, and school started saying things like maybe the pain is all in my head, or that I’m looking for attention even if it’s unintentional. It was really hurtful for me to hear those things because it felt like people thought I was making up my pain or enjoying going to the hospital and getting surgery — and what teenager would enjoy that? When I got diagnosed it was such a relief because now I could be treated and now my feelings were validated. It was then that I decided that I want to help spread an awareness about chronic pain and that in the future I want to help other kids who are going through similar situations that I went through. I want to take this negative thing that happened to me and turn it into something positive by helping people. That’s what lead me to CHYP and what lead me to now try and pursue a career in medicine. I hope to be a doctor one day, and a doctor who understands their patients and validates how they feel. It’s hard being a teen with chronic pain, I can’t keep up with my friends, I can’t do everything they get to do and they don’t always understand me. That’s why helping in a program like CHYP is SO important to me. So that other teens understand that they’re not alone, that there are many other people like them who have similar struggles and there are ways to deal with them. For example, I like to read, paint, draw, write, scrapbook, pet my dog, bake, and talk on the phone with friends and explain my struggles to them so that they understand. These are all very helpful things that can help you get through a bad pain day. Just anyone reading this know that you are not alone, and that things can get better and you too can be successful in the future. You may have to do things a little differently than others but you can still do it. ❤