Invisible in Taiwan: Living in Taipei with Chronic Illness

What life is like in Taipei for people who are mobility compromisedThis article attempts to describe the pros and cons to living in Taipei with a chronic illness. It’s hard to describe what it’s like living in an Asian city with mobility issues. 

I live on the river that divides Taipei and New Taipei in Taiwan. I’m a Canadian expat and I’ve lived in Taiwan since 2006. 

I have Ankylosing Spondylitis, Fibromyalgia and ME, among a number of other chronic conditions that cropped up over the past 20 years. My husband and I have stayed in Taiwan rather than returning to Canada or the US because the health care is very reasonable here, the weather is mild, and life in Taiwan is inexpensive. It’s not so convenient for folks with disabilities though.

In the past few years as I’ve gotten sicker, Taipei and New Taipei have become less accessible to me. Air pollution has become a huge problem in the past decade as well and acts as as trigger for flares.

We’re satisfied with the care I receive here, but there is room for improvement, especially for people like me with an illness that doctors don’t know much about.

What’s the Quality of Life Like Living in Taipei with Chronic Illness?

Best thing about Taipei and New Taipei for living with chronic illness?

What is the quality of life like for mobility compromised patients in Taiwan?

Taipei and New Taipei are passable for folks with disabilities and I haven’t changed my mind since writing this post. If anything, my list of inaccessible places has grown as well as my frustration at the utter lack of knowledge about what people need to navigate if their mobility is compromised.

To start: The best thing about living in Taipei is having immediate access to my medical team.

Worst thing about Taipei and New Taipei for living with chronic illness?

Not having access to nature is devastating to me because I thrive in nature. Although there are plenty of parks in Taipei and New Taipei, the parks near my home are not accessible because I live next to a tidal river park with flood walls.

On days that my husband is willing to push me up an incline, over the wall, and down into the park – those days are glorious. We can find plenty of trees by the river to sit under and have a picnic and watch the water roll by.

Parks in downtown Taipei are more accessible with Da’an Park being the best of the bunch. The only issue with Da’an Park is that the bathrooms are hard to access. I host Taiwan’s only World AS Day picnic in this park each year, but every year it gets harder for me to get into the park.

A new(ish) tourist spot went in at Dadaocheng Wharf and I was excited about it because it’s flat, has lovely scenery, and a nice number of restaurant stalls. To my surprise, the new public bathrooms in this area say they accommodate people with disabilities, but you have to step up to get in the bathrooms and slide open a heavy door to enter. Once you’re in, it’s impossible to turn around.

Cities in Taiwan are mostly comprised of older buildings. New buildings tend to be up to par. Older buildings that are eight stories or less rarely have elevators. Most of my friends live in older buildings, so I’m no longer able to visit them because I can’t climb their stairs.

We’re lucky to live in a building complex that is friendly towards the disabled. We have elevators, an indoor walking track for the blind and for seniors and people like me, and our neighbors are terrific.

How accessible do you think your city is in general?

Taipei and New Taipei are horrible for accessibility. Wheelchair ramps and doors are blocked with garbage, pottery, furniture, and old plants. Sidewalks are not level and are often littered with garbage and things that people don’t want. 

READ:  Surviving the Holidays with Chronic Illness - Tips and Tricks

Most people in my area that use a wheelchair ride on the street because the sidewalks are blocked. People also park their cars and scooters on sidewalks, giving people no choice but to walk on the street.

Wheelchair-friendly public bathrooms, as I mentioned above, are not friendly.

MRT stations have elevators for the elderly and for the disabled, but good luck getting on one. The lifts are hard to access because the general public use them, especially students with large suitcases. It’s not uncommon for me to have to wait for the elevator for three rounds before I can get on. This is why I stopped using public transportation.

This also happens at my hospital! Infuriating!

If you are brave enough to get on the MRT, no one will move aside for you or wait for you or assist you. People will not give up priority seats or make room for wheelchairs.

The MRT has introduced a sticker that you can put on your wheelchair or bag to show that you are disabled or have an invisible illness, but people don’t pay attention.

It’s easier to cab everywhere than it is to take the bus or MRT.

Public indoor spaces are not accessible to me. A great number of the restaurants in town that I used to visit have stairs, so we don’t go to those restaurants anymore. I’ve started rating venues on how friendly they are towards guests with mobility issues because a great number of businesses in Taiwan do not cater in any way towards disabled people.

Additionally, I’m finding that a lot of staff simply aren’t trained in any way to work with disabled customers, no matter how much you call in advance to let them know you’re coming.

Many small towns in Taiwan have cobbled streets and let me tell you, cobblestone streets ARE THE WORST for trying to navigate on, whether you’re in a wheelchair or walking with a cane.

What life is like in Taipei for people who are mobility compromised

How educated is the public on chronic illnesses there?

Knowledge about chronic illness here is limited. If it’s not visible, people don’t understand it. Until I started advocating forAnkylosing Spondylitis in Taiwan, no one I knew had even heard of it.

During my first year of campaigning for awareness, I had eight people reach out to ask where they should go for help and support.

To date, I’ve yet to find a doctor who specializes in MECFS, and I’ve found most doctors at most hospitals in Taiwan are behind in up-to-date research on AS.

I have found a few support groups online and there seems to be an active group for AS in Taipei that organizes get-togethers, but other than that, people don’t seem to know about it and doctors seem very undereducated about my illnesses.

The public isn’t aware unless they’ve seen my posts. 

If you could pass one new law in your country, what would that be?

If I could pass one new law in Taiwan, it would be to grant easier access to anti-TNF treatments for patients who need them. The current criteria list for accessing these medications is out-dated and ridiculous.

I have all the extra qualifying symptoms to access these meds. For example, the chart below is used in North America to diagnose AS. I have all but two of the SpA features listed on the left. That leaves a firm answer for my diagnosis. Sadly, in Taiwan, the only way they’ll grant anti-TNF meds under health insurance is to people who meet the criteria list on the right. 

In other words, I have to have the genetic marker for AS to gain access to anti-TNF medications under health insurance. The cost of this medication without health insurance is $1000US a month. So that is what I’m currently paying for treatment. I pay more for my meds at NT$30,000 a month than I do on rent. 

READ:  Taiwan's Spring Flower Festivals - Calla Lily Festival (2012)
AS Classification Criteria
A chart showing classification criteria for Axial Spondyloarthritis distinguishing between patients who are HLA-B27+ and patients who are seronegative with other matching criteria for AS.

If I could pass a law, I’d make disabled parking passes easily available to those in need. In Taiwan, it is next to impossible to get a disabled parking pass and even if we could get one, no one would observe it or care.

Disability should also be easy to access, yet I’ve found no way to claim disability. I’m still looking for answers about this.

I would also make CBD and medical marijuana available to patients who are suffering. 

Which is your favorite city or country (other than your own) and why?

Singapore and Hong Kong have been easy to get around by wheelchair (in my experience). When we’ve been able to travel, we’ve headed to accessible locations that allow us to see as much as we can without putting too much of a strain on my health.

I love Barcelona with all my heart and would gladly move there for a bit just to soak up the city vibe.

Where in the world would you visit, if disability, illness or level of fitness weren’t an issue?

I traveled to South America before I got sick and saw Argentina, Paraguay, and Uruguay.

For many years now, I’ve wanted to visit Bolivia and Peru. If I had the use of my legs and could do some hiking, I’d love to see both countries. Bolivia really intrigues me because of its indigenous heritage and stunning scenery, and of course, I’m itching to check Machu Picchu off my travel list, especially now that they’ve introduced their accessibility program!

What sort of alternative treatments or therapies wouldn’t raise any eyebrows there? (Perhaps it’s ingrained in the culture, totally legal, etc).

Traditional Chinese Medicine and other Eastern alternative therapies are widely available in Taiwan under health insurance.

I’ve tried different alternative treatments, from cupping, scraping, and bloodletting to acupuncture and Japanese acupressure. I’ve also tried massage therapy, Reiki, and dry needling. I’ve tried many elimination diets and clean eating diets in an effort to combat inflammation in my body.

Out of all these treatments, one diet has worked for me so far, and I found Reiki and Japanese acupressure to be helpful.

Which are the most and least affordable therapies there? How much do they cost in general?

Traditional Chinese Medicine did not help me. I tried it with several doctors for many years and it never worked. If you find a doctor who can treat you and it’s covered under health care, the cost is very reasonable. It’s around NT$150 ($5USD) to see your doctor and get your medicine.

Acupuncture is affordable but it didn’t help me. I do know patients that it does benefit and they can access each session for approximately NT$150NT.

The most I paid for an alternative therapy was to a famous TCM doctor in Taipei who claimed he could cure cancer. This man was so famous for his TCM, he asked his patients to pay out of pocket. That was an expensive lesson to learn for $800US a month for six months. I’ve learned my lesson with alternative therapies and I wish that people would stop suggesting them to me. 

Acupressure treatments were also quite expensive but it helped a bit. I tried a form of acupressure called Jin Shin Jyutsu and the 90-minute treatments worked, but they were NT4,600 ($150US) per treatment and the recommended number of sessions was four times per month minimum. When I factored in the cabs there and back, we couldn’t afford it. It was well over $200US to get there and back and took four hours out of my day.  Treatment needs to be affordable and accessible.

How expensive is it to live with a chronic illness there? Any stats you’d like to share to give a clearer picture?

Taiwan has a universal health care system that covers approximately 96% of the population. One of the reasons why we’ve stayed here is because we have quick and easy access to health care here and it’s inexpensive, but if you have health problems that aren’t well known, it’s easy to fall through the cracks in the system.

READ:  Self-Realizations from Living Abroad: I Can Eat Anything

Because everyone has access to health care, the hospitals are busy with people going to ER to be treated for colds and flus. This is a heavy burden on the system when they could be heading to local clinics for help.

It’s typical for doctors to see 101 patients in a half day session which means that I have to work hard to make an impression with my doctors. I’m very diligent about making sure I take my notes from each appointment in and I get copies of all my tests. I have everything documented going back to 2009.

Taiwan’s Universal Health Care plan provides health care for everyone with employers paying 75% of your health care and you paying 25%. You can also opt into the system on your own.

If you’re employed, your monthly payment depends on how much money you earn, but most expats I know pay around $25 to $30 US per month for health care and they can see a specialist at any time for an additional NT$150. This includes your visit to the doctor and your medications.

What are the hospitals like in terms of service, quality of care, emergency room protocols, etc?

Hospitals in Taipei and New Taipei range from good to bad. It depends on the hospital.

I go to a private Buddhist hospital that is swanky compared to some of the older hospitals in Taipei. Each hospital I’ve been to is overcrowded.

None of the doctors I’ve seen for AS are up-to-date on the latest research. I’ve yet to find an expert who actually knows what they are talking about with Fibromyalgia and ME, which means I must advocate for myself and be pushy at each appointment.

When I’ve been in ER, we’ve paid close attention to what is happening. It’s inconsistent across all hospitals in Taiwan. Usually private hospitals offer the best ER care.

One thing that really bugs me about hospital care in Taiwan is that your family looks after you. They provide your food, wash you, help you to and from the bathroom, and even meet you in post-op to wheel you back to your room after surgery. It’s a no frills system here for hospital and post op care.

What should foreigners be aware of in regards to healthcare, if they want to visit or work in your city?

One perk to travelers is that if you don’t have health care and you have a minor problem like a sprained wrist, you can get treated for next to nothing. However, there is a high rate of accidents here in Taiwan because of traffic. A scooter incident would be an example of something that could get very costly. 

Travelers coming to Taiwan should have additional coverage. If you’re coming here to work, you need coverage until your Taiwan health insurance kicks in. This usually happens around six weeks after you’ve arrived in Taiwan.

If you’re chronically ill and you want to work here, you must pass a health test to show you are fit to work. If you have mobility issues, I’d say that Taipei and New Taipei should be crossed off your list. I’d focus on Kaohsiung, which is surprisingly accessible and a beautiful place to live!

Many thanks to Sheryl at A Chronic Voice for organizing this link up party for chronic illness bloggers around the world. 

Invisible in Taiwan:

Living in Taipei with Chronic Illness

Spread the love
  • 698
  •  
  • 8
  •  
  • 12
  •  
  •  
    718
    Shares
  •  
    718
    Shares
  • 698
  •  
  • 12
  • 8
  •  
  •   
  •  

Post Author: Carrie Kellenberger

I'm a chronically ill Canadian who has been living in Asia since 2003. I moved from China to Taiwan in 2006. I'm an experienced businesswoman and have worked in many leadership positions. My husband and I have owned our own business in Taiwan since 2012. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to several publishing companies and travel publications in Asia and North America. I started writing about my health journey in 2009 after being diagnosed with Ankylosing Spondylitis. In 2014, I was diagnosed with Fibromyalgia and ME/CFS, which came with other massive health issues. These diagnoses were the start of my journey as a health advocate and patient leader. Since then, My Several Worlds has been recognized worldwide as a top site for chronic illness by WEGO Health and Healthline. Twitter @globetrotteri Instagram at https://www.instagram.com/carriekellenberger/. I also have a dedicated page for My Several Worlds at https://www.instagram.com/myseveralworlds/. Each IG feed features different content.

12 thoughts on “Invisible in Taiwan: Living in Taipei with Chronic Illness

    Jenny

    (October 15, 2018 - 8:20 pm)

    Wow, this was so interesting! I’ve never been to Taipei, so I really enjoyed reading your descriptions of living there. Sounds like it can be quite frustrating at times though.
    How is a Buddhist hospital different to a non-Buddhist hospital?

      Carrie Kellenberger

      (October 16, 2018 - 3:05 pm)

      Hi Jenny! Thanks for stopping by. My Buddhist hospital is one of several hospitals throughout Taiwan that is run by a Buddhist volunteer organization here in Taiwan, so the hospital is funded by the people who fund the organization.

      I love this hospital. The volunteers are all really nice and it’s terrific to walk in and see so many smiling faces willing to help. Most of the volunteers are seniors who want to do something for the community. Because it’s a private hospital, the lobby and waiting areas are a lot nicer. They spend money on making the hospital look nice and pleasant for patients. They play live music in the lobby – piano, harp, flute, sax and more. They also spend a lot on Buddhist decorations and because it’s privately funded by patrons of the organization, these types of hospitals tend to have the most up to date equipment.

      Private hospitals are the way to go in Taiwan. I received my diagnosis at a private hospital in Taipei in 2009 and then moved to a teaching hospital, but the level of service and the quality of the machinery at public hospitals is not as good, plus you have to deal with student doctors. I have nothing against learning hospitals, but after you’ve made the rounds for years and you’re chronically ill, it gets REALLY tiresome telling your story over and over again.

      I’ve got you on my list now and I’ll be dropping by The Chronic Traveller more frequently now. It’s nice to meet you!

    Sheryl

    (October 17, 2018 - 10:33 am)

    Thanks for sharing and joining us in this linkup, Carrie! It was so interesting to read and I’ve scheduled excerpts from this all the way to the end of next year, ha. Great info for both healthy and chronic illness folks alike! Makes me want to move there. Funny because when you say $1k a month for biologics, my first thought was how cheap that is, heh. I need to move somewhere with a universal healthcare system too, you made a smart move! 🙂

      Carrie Kellenberger

      (October 25, 2018 - 3:52 pm)

      Thanks, Sheryl! This was such a great idea for a link up. It really gave me the boot I needed to get this article finished and ready to go, and I love that I’m sharing with other chronic illness bloggers all over the world. I was shocked when you told me how much you pay in Singapore, but after reading your post, it sounds like you get better care and Singapore is better than Taiwan for accessibility. I guess I need to go back to Singapore to make that comparison. It has been a few years since my last visit.

        Sheryl Chan

        (October 1, 2020 - 5:46 pm)

        I love how this post is still so relevant and useful 2 years later! Wonder if things have improved. Slowly but steadily!

    mity

    (July 31, 2020 - 1:48 pm)

    Hello there!
    I’m living in taipei too with Fibromyalgia! Right now I’m trying to figure non medicinal ways to manage and control my symptoms but it’s a hit and miss!

    Claire

    (September 30, 2020 - 9:13 pm)

    it sounds like Tapei must be quite challenging for you, especially in terms of accessibility. London is getting better, but also an old city has lots of issues with steps etc. I hope that the pros in other areas of your life outweigh the cons 🙂

    Alison

    (October 2, 2020 - 9:21 pm)

    Carrie,
    Taipei sounds beautiful and frustrating, The image of people putting what they don’t want out on the sidewalk, ramps, and doorways feels so stressful and annoying, but I can almost feel your appreciation of the parks and natural spaces in and around the city. Being so limited on where you can go, and the lack of comprehension of so many people has got to be frustrating, but I am glad to hear about how relatively easy it is to get treatment. Hate that they are so far behind on research though! That has to be so aggrivating. Thanks for giving me a deeper understanding of how things work there!

    Shruti Chopra

    (October 2, 2020 - 10:01 pm)

    I can never understand why, when people construct new places, they don’t consider accessibility and even if they do, it doesn’t match the guidelines, there is no practical testing of it. I think it all comes down to valuing every customer, which sadly isn’t the case. Also, if only they’d realise that if they made places accessible, they’d see more disabled people around. Hmmppff… I guess before I go into a long rant, I’ll stop here and say – Thank you for sharing this Carrie. I hope our cities develop some sensibility soon.

      Carrie Kellenberger

      (October 8, 2020 - 3:28 pm)

      This is exactly what we are advocating for here in Taiwan. Right now, city planners do not have any disabled people sitting down with them to help with planning guidelines and that is why things are such a mess. Non profit orgs have freely said that we don’t have a seat at the table and things are not thought out properly because of this. It’s so very frustrating. I don’t know what it’s like in India, but there is massive stigma around disabled people in Taiwan. Families care for their family because there is no government support. Some might get lucky with help from a non profit, but the non profits also don’t have much say.

      Before 1980, the term ‘disabled’ translated to ‘useless and worthless disability.’ The government was not responsible for these people nor did they provide education or awareness programs or provide funding or support to disabled people. It hasn’t improved much. And yes, it makes me want to rant too, Shruti. It’s like they don’t want us in public causing problems. It’s just so discouraging.

    Katie Clark

    (October 28, 2020 - 11:23 pm)

    For you foreign teaching students that come over, what do they do? How does that work?

    I understand, though, how you and your husband have come to love Tapei, Taiwan. I’ve enjoyed reading your travel posts. The weather sounds ideal in many ways. Plus, you have the business that you’ve created. Hard to now leave that behind. Even if you went back to Canada to get the medication prescribed, it wouldn’t help with the cost, right?

    Sure hope you can get done with this awful proof test and get the coverage you need to get the correct medication. You are a strong woman. I just can’t imagine all you’re going through right now.

      Carrie Kellenberger

      (October 29, 2020 - 3:54 pm)

      Hi Katie,

      We own a recruiting company that places teachers with English programs all over the world. New teachers that are TEFL qualified, experienced TEFL teachers, and certified teachers come through our company and we help places them at private schools, public schools, and at international schools all over the world. Our primary programs are Taiwan, South Korea, and China, but we shut our China program down for a bit when the pandemic hit.

      When teachers come to Taiwan, it’s my job to ensure they’re settled into their jobs and new life here. I correspond with them regularly via email, text, and chat groups. I try to arrange an event once most of them arrive after each major hiring season is over so they can meet me and they can meet each other and form friendship and a support network. (They need some time to get settled in and get through those first few months of teaching in a new country. It’s much harder than anyone thinks!)

      Most of the teachers I work with are fresh out of university. This summer, we had a lot of 23- to 28-year-old teachers move to Taiwan from the US and I’m chatting with them almost every day and helping them get what they need to be comfortable here. My experience over the past decade is that most the teachers I work with tend to stay in Taiwan and then they stop being ‘my teachers’ and end up being friends or closer to family. Expats are a tight-knit group. We take care of our own since family is so far away.

      I can’t imagine moving again. I can’t imagine coping with winter in Canada. Our whole life is here and we’re very active and involved with the community here.

      I really hope so too. I just started my meds again yesterday but it hasn’t been a pleasant month. The toll of not being on the meds that keep me somewhat stable is obvious. I’m really dragging now and likely will just rest until I meet my new batch of teachers towards the end of November.

Leave a Reply

Your email address will not be published. Required fields are marked *