Invisible in Taiwan: Living in Taipei with Chronic Illness
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, Fibromylagia 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.
Living in Taipei with Chronic Illness
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 in Your City with an Invisible Illness?
Best thing about Taipei and New Taipei for living with chronic illness?
Taipei and New Taipei are ‘passable’ for folks with disabilities.
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. Then you have to 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 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. 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, which is 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 do not feel 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.
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.
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 Myalgic Encephalomyelitis, and I’ve found most doctors at most hospitals in Taiwan lag 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, even most of my friends who know I’m sick, have no idea what ME is.
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, but 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.
I’d pass a law to 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.
I’d also make CBD and medical marijuana available to patients who are suffering. It’s ridiculous that doctors push harmful drugs on patients when they could be offering the benefits of natural CBD and medical marijuana.
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, so 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!
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 many 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 150NT ($5USD) to see your doctor and get your medicine.
Acupuncture is also very affordable but it didn’t work for me. It also costs 150NT per session at TCM hospitals.
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.
Acupressure treatments were also quite expensive but they 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.
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 researched, it’s easy to fall through the cracks in the system.
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 bad to good. 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 and it’s inconsistent across all hospitals. 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?
If you’re chronically ill and you want to work here, you must pass a health test to show you are fit to work. You can opt into the health care system here on your own if you wish, but if you have mobility issues, I’d say that Taipei and New Taipei should be crossed off your list.
Many thanks to Sheryl at A Chronic Voice for organizing this link up party for chronic illness bloggers around the world. It has been really interesting to learn about what others are dealing with in other cities around the world.