Interview with Carrie Kellenberger on Life in Asia with Chronic Illness
Along this path of the last 3-years, working to figure out my life with Fibromyalgia and other chronic conditions, I’ve met some amazing people. Carrie Kellenberger is one friend who I’ve connected with on many levels. The first level was through our shared experience with Fibromyalgia and chronic illness. I have learned how to live more FULLY through her sharing of her own journey. Although I’m her senior in age, she has lived with chronic illness and shared her story for much longer than I have.
As we began to connect more personally, I found out that she is a teacher at heart. She understood my deep sadness at having to retire before I had planned due to developing Fibromyalgia. Also, she is a lover of books. As a 6th grade English teacher, I am well versed in adolescent literature. However, Carrie is my new source of book recommendations in adult reads.
Carrie’s website My Several Worlds is a nod to the famous author, Pearl S. Buck and her namesake novel about her life in China. When Carrie started MSW in 2007, she focused on writing about her life as an expat and her adventures in Taiwan. At 34-years old in 2009, she began writing about her journey with chronic illnesses: fibromyalgia, ME/CFS, and ankylosing spondylitis.
“My illnesses have shaped my worlds and have inspired me to support other patients,” Carrie explains. This past year, after 12 years of being a patient advocate through bringing awareness, resources, and support, Carrie was nominated as a WEGO Health Finalist for Life Time Achievement.
This year has been crazy, but meeting you has been a bright spot. Although you’re on the other side of the world and a good 10+ years younger, I have quickly found a special friendship with you, one of mutual understanding and respect. I’m looking forward to sharing your story with the PFL readers. Thank you for joining us.
Life in Asia: What brought you to Taipei, Taiwan?
Hi Katie. Thanks so much for featuring me on Pain FULLY Living.
My journey to Asia is a rather long one that spans close to 18 years. The condensed version is that at age 27, I decided I wanted to travel and see the world before settling down. I quit my job and moved to northeast China to teach English. That was back in 2003, and I really enjoyed my time in China. I moved to Taiwan in 2006 after my husband. At the time, salaries were better in Taiwan and we felt that island life might be a better fit for us. We moved from wintery northeast China to subtropical Taiwan and have never regretted it.
I taught in Taiwan for three years before moving into publishing. Most people are surprised to learn that I still write textbooks and reading comprehension books for middle school and high school students. There is an unusual fact for you that most people don’t know about me.
You run a business in Taiwan using your teaching background. Tell us what all is involved.
When I was finishing up college with French and English majors and a teaching degree, I was considering going into the Peace Corp. I’ve always been drawn to learning about other cultures. Your business with Reach to Teach sounds like such a wonderful program. How did that get started?
An opportunity came along with Reach To Teach that placed me at my school in Taiwan. I moved into their Global Director of Recruiting position, and it eventually led to me becoming the new owner of Reach To Teach Recruiting LTD in June 2012.
Today, my official job is President of Reach To Teach Recruiting, which is one of America’s largest ESL placement agencies. We place English teachers at schools all over the world, but most of our positions are in Taiwan, South Korea, and China.
My day to day business with Reach To Teach is pretty busy, and I have to pack it into shortened work hours due to chronic illness. I can get 2-3 hours of work in before I need to lay down. As the owner, I wear a lot of different hats because I’m running our business. I manage our website and Applicant Tracking System. I also liaise with our schools in China and Taiwan, and I have to manage my teachers here in Taiwan, while prepping new teachers to make their move to Taiwan.
Managing Work and Chronic Illness
Healthwise, it takes a lot out of me. There are days I have to push through and when I hit weekends, I don’t want to see or speak to anyone else. I just want to rest and recover. But I also count myself lucky that I have my own businesses and that I’m still able to work from home and earn money. I know many people in my situation do not have this kind of opportunity.
Healthwise, it takes a lot out of me. There are days I have to push through and when I hit weekends, I don’t want to see or speak to anyone else. I just want to rest and recover. But I also count myself lucky that I have my own businesses and that I’m still able to work from home and earn money. I know many people in my situation do not have this kind of opportunity.Tweet
Women of Many Talents
My mornings consist of phone calls to North America to interview teachers. I’m not a huge fan of being on the phone because they trigger cognitive issues and migraines pretty quickly. I try to space my calls out and include frequent breaks so I don’t hit overload. If I have morning calls, I simply don’t answer my phone at all the rest of the day, and especially at night. (Unless my mom is calling. Always answer your mom when she calls.)
The website and our Job Board are the biggest aspects of my business because our website is old. It was coded in 2005, and as we both know, websites have grown immensely since then, so I feel it’s like a house of cards waiting to collapse. (It’s not that bad, but when I compare it to recent sites I’ve built, there is a huge difference.) I’m also responsible for our search engine optimization, which is why Reach To Teach is so highly ranked in Google and other search engines, and I take care of our social media campaigns and newsletters, while managing my staff for Taiwan and China.
Additionally, running my own business for so long and having such a wide skill set has opened many other doors for me, so I get a lot of freelance business from folks in Asia who want a new website or want to know how to integrate a Job Board or a shop into their website. My knowledge of WordPress is pretty extensive, so I’m always happy to take on extra work. I guess that’s one huge benefit to being with WordPress since 2007!
Why have you chosen to stay in Taiwan?
It’s hard to say what I love about Taiwan because there are so many things to mention. Today, I’m grateful to this island for keeping me safe and having a proper pandemic response. There is no pandemic here. I adore the people here. I love the food and the blend of cultures, and for such a tiny little island, there is a lot to see and do here. Plus, Taiwan is very modern. There is always something happening here. Taiwan is a very forward-thinking, free and progressive society. It’s exciting to be a part of it. Life seems slow in North America when I go home to visit, although I’m always amazed by the staggering choice and range of products that North Americans have access to. I experience reverse culture shock every time I go home.
If someone was wanting to visit Taiwan, what advice would you give?
For anyone thinking of moving to Taiwan, first off, please feel free to get in touch with me!
Second, be sure to do your research and learn as much as you can. You need to keep an open mind. People here are very kind and understanding, but in my line of work, I often see people show up here and they have very little understanding of cultural differences.
An example I see over and over again is people coming and saying, “This isn’t how we do this back home.” My reply to that is that they didn’t come here to do things like they do them back home.
Recently, and especially with COVID-19, I’ve noticed that North American cultures are focused on individuals, while Asian cultures tend to be focused on the group as a whole. That is always a big adjustment for people to get used to.
The point of moving abroad and immersing yourself in a different culture is to learn and grow as a person. You don’t move abroad to do things the same way you’ve always done them at home. You move abroad to learn about different cultures and ways of doing things, and this eventually leads to global citizenship, which is a wider understanding of the world. The individual starts to discover their own place in the world as a world citizen and begins to learn more about valuing diverse cultures.
Every country is different and as global citizens, we need to recognize this and be respectful. If you’re interested in learning about life in Asia or life in Taiwan, please visit My Several Worlds. I have hundreds of travel articles on MSW mixed in with articles about my journey with chronic illness. There’s something for everyone to enjoy on My Several Worlds.
Tell us about your home life and family growing up.
My parents are both teachers, so I’m sure you can imagine that I moved into teaching naturally. As a child, I’d help my mom prep her kindergarten classroom with decorations and when I was old enough, I volunteered in her classroom to get some experience before moving to China.
My dad was Head of the PE department at our local high school, so I had the pleasure (and experienced the dismay) of being taught by both parents. My dad coached me in everything – basketball, track and field, downhill racing, skating, gymnastics, badminton, you name it, we did it. (You can see him to the right of the photo above wearing a beige sweater and glasses.)
We grew up thriving on sports, so I was very athletic up until I got sick. Some of the injuries I sustained in high school now make sense. Most people don’t dislocate their shoulder in volleyball or basketball. (I dislocated both shoulders.) I also dislocated my knee coming out of racing blocks in the 100 meter dash at age 21. That was a sign of things to come.
How is it you and your husband met? Being he’s an American and you’re a Canadian, how is it you both chose to stay in Taiwan?
I met my husband in China a year into my teaching contract, and we’ve been together ever since. He is from America, but we met while he was in China for a work internship program. We decided to move to Taiwan together in 2005 and we got married in 2008. I got my diagnosis two months after our wedding ceremony. We had no idea what it meant back then and were really unprepared for what happened and how it progressed so quickly afterwards.
It has been a tough adjustment for both of us. We were able to keep traveling for the first three years after my diagnosis until I got too sick to keep up with it. We are on our own here in Taiwan and like most expats, we do not have family nearby, so he’s my primary means of support and has to handle all the tough stuff that I can’t help him with anymore. He doesn’t talk much about what has happened, so I can’t speak for him or say how this has affected him. All I know is he’s in my corner 100% and he moves heaven and earth to make things easier on me. It has been wonderful to travel the world and see so much of the world (over 35 countries) with my best friend.
Where did you teach? Why did you go into teaching? When/Why did you leave?
I’ve taught informally in Canada. At age 26, I introduced a kinder-beading program into senior kindergarten classes that was a fun activity for five-year-olds. Beading taught them pattern-making and math skills. I’ve taught art classes since I was in my early 20s across many mediums with students of all ages.
I was an English as a Second Language (ESL) teacher in Changchun China for three years. Then, I taught ESL in Taiwan for three years, and when I moved into publishing, I had to travel to schools to teach teachers how to use our textbooks and ESL magazines. I have continued teaching art classes now, so I’ve never really left teaching behind.
Working with teachers over the past decade and also having taught myself, I see the stress and burnout and lack of self care that happens with teachers. I can tell you plenty about that, but that would require another article.
As a teacher who retired due to difficulties with Fibromyalgia, I have felt strongly that the teaching profession needs help to lessen the stress that is innate to the job. I’d love to help educators learn many of the stress management techniques that I have learned since retiring. What have you experienced as far as stress and teaching?
Part of my job with Reach To Teach is prepping teachers for what they are entering into in Taiwan with a teaching position. I’m amazed at how many people think teaching is supposed to be easy. It’s never easy. Not in any capacity. There is a lot of work that goes into planning and presenting your classes, and there’s follow up work and work involved with assisting your students. I’m surprised when teachers expect that there is no take-home work with teaching.
Having grown up in a teaching household, I can say that my parents brought home plenty of work outside of school. That’s just part and parcel of working in education.
If anything, teaching is one profession that will really separate the wheat from the chaff. You’ll either do really well with it or you’ll discover it’s not for you. Teaching is a rewarding profession, but it’s also a profession that requires discipline, excellent time management skills, a willingness to take on challenges that come up at the last minute, and a desire to work with your students. It takes time to learn all of this. I’d say that most teachers even out about six months into their new teaching positions, but those first six months are tough because you’re learning as much as your students are. The best teachers are the teachers who learn as much as they are teaching.
Life in the day of a teacher;)
My last teaching job was a real disaster and it was a very stressful job because the school was not organized and didn’t communicate properly with their teachers. I was teaching in a kindergarten and had 25 five-year-olds in that class. The school had me teaching in the kitchen!
Teachers would come into my classroom on my lunch to do their cooking classes. It was very disorganized and chaotic.
One day, a teacher was using my classroom for her cooking class and left her muffins in the industrial oven in my classroom. We came back from PE and everyone got settled at their desks, and then one of my students asked if something was burning. I never clued into the oven being on because who would do that knowing there is a group of 25 five-year-olds coming in at 2pm?
Anyways, the muffins were on fire and the kids were freaking out. I got all the kids out of the classroom, somehow managed to call the secretary and tell her what was going on in Chinese, and then wouldn’t you know it? I didn’t have the strength to get that darn muffin tray out of the oven. At that time, AS had already hit my shoulders and knees hard, so I had no strength to get that tray out.
So the tray was in flames, the fire department came, and I left the school immediately and said ‘never again’. That school is famously known as ‘The Zoo’ in Taipei and for good reason.
When did you start to really notice something was off physically? How did it affect your life?
That last classroom incident was in 2008, and that’s when I started noticing a landslide of joint pain everywhere. I had days when I couldn’t lift my arm or days when I couldn’t put weight on my foot or my legs. Some days I’d stand up, and it felt like I was standing on broken glass in bare feet.
But it came and went, so I put it down to working out, just like my doctors had told me in Canada. My doctors thought I was too young to be experiencing serious pain, so I heard ‘hypochondriac’ a lot in my late teens and 20s.
That is so discouraging that doctors don’t take young people seriously when they have complaints. Certainly, having a doctor mention hypochondriac (even if not in those words) just fans the doubt we already have with what is going on in our bodies.
Yes, it does!
Clearly, I’m not a hypochondriac, so my point here with any new patient is to trust your gut and always get a second opinion. Don’t let anyone tell you that you don’t look sick, or you’re too young or let them dismiss your pain!
By mid-2008, the pain was constant and within six months, the doctors here in Taiwan gave me my axial spondyloarthritis diagnosis. I received my diagnosis two months after my husband and I were married in Mexico.
There was a trail of symptoms leading up to my diagnosis. I suffered close to 15 years before I got an actual name for what I was living with, and I had symptoms in Canada, China, and Taiwan. I was showing more severe symptoms of illness in China between 2003 and 2006, but there was no sudden onset of illness with me until 2008.
Wow, what a difficult diagnosis to hear just months after your wedding. It’s amazing that the doctors in Taiwan diagnosed it so quickly after so many had ignored it.
I’m very grateful to my doctors in Taiwan who never dismissed me and took me seriously from the get-go. I still find it strange that I had to get my diagnosis in a foreign country because no one would listen to me in my home country! After my diagnosis, AS hit hard and fast and there was nothing we could do about it. AS is a very progressive and serious disease and it had gone undetected for over a decade.
I received my Fibromyalgia and MECFS diagnoses in December 2014 and that was a whole different level of pain that I was dealing with.
Since then my health has snowballed into a string of diagnoses, and I seem to be adding something new to my list of things to deal with each year. My most recent diagnosis is Psoriatic Arthritis, which is what I thought I had back in 2009!
What do you do to manage your pain?
Everyone handles pain differently. My primary med is a biologic called Enbrel, so that has helped immensely in taking away some of the spinal pain I deal with. I also rely heavily on daily painkillers. That’s just part and parcel of living with AS and fibro. I use many different natural coping techniques to get those feel-good endorphins going, though.
Having good coping techniques is a huge part of living with pain and it’s an essential part of self-care.
- Hot magnesium baths, three times a week is a must. I soak for 30 minutes at a time in a Japanese tub, and I make my own spa mix:
*1 cup Epsom salts, ¼ cup magnesium chloride flakes, a squirt of almond oil for soft skin and a few drops of my favorite essential oil. (I love jasmine and lavender.)
- Art is a huge coping technique for me and I spend a few hours each day creating art. I practice floral arranging and indoor gardening. I’m also an Ikebana master. (The art of Japanese floral arranging.) I make jewelry, color, paint, and I’ve taken many photography classes. Basically if it’s art, I’ll happily give it a try.
- I’m a huge reader, as you know. Losing myself in books is a great distraction technique for me.
- Blogging and writing is a great form of therapy that I genuinely enjoy. If I’m able to sit up, writing is a joy and I love building on my site and also assisting others with their sites.
- My advocacy work involves lots of volunteer work, and I find that giving back to organizations that have helped me, whether it’s by sharing my story or writing content for them, always leaves me feeling good.
Do you have any advice to others who live with chronic pain?
For anyone who is living with chronic pain, I’ll leave you with these words of wisdom as someone who has suffered from debilitating pain for over a decade.
Pain changes you, but it makes you stronger and more compassionate. Remember that you’re not alone.
It’s okay to talk about your pain. Don’t be afraid to reach out to others, whether it’s via a support group or to other patients directly. Knowing that other people are experiencing some of the same things you’re going through makes it easier to get through.
Never be afraid to use your voice and advocate for yourself. As someone who has been advocating for awareness for 12 years, I’m happy to speak with anyone who wants to chat and I’m always here to lend a listening ear.
READ: Let’s Talk About Pain
Wow, Carrie! Such amazing adventures you’ve led. Yet, I know we’ve just scratched the surface. I sure appreciate you spending this time with us. I know that many PFL readers will find encouragement in your sharing.
Thanks so much for having me, Katie! You’re an amazing friend and advocate, and I’m so glad that 2020 brought us together.
Carrie is a phenomenal patient advocate, teacher, and friend. I highly recommend checking out her site for great travel articles, book reviews, and chronic illness information. Oh, and if you’re looking to teach in Asia, contact her through her Reach to Teach program. I sure would do it if I were starting all over again.