Chronic Illness and Disability on the JET Program

I interviewed a friend of mine who is working as an ALT (assistant language teacher) on the JET Program (Japan Exchange and Teaching). She wanted to tell her story about her experience working in Japan with chronic illness and hoped it would be helpful to others worried about their own disabilities.

 

Who are you?

I’m a third year JET ALT who teaches junior high and elementary English in Eastern Japan. In my third year, I became a member of a prefectural JET committee which creates prefecture-wide conferences and seminars for all JETs. I am also an ALT leader at my city’s Board of Education.

I am diagnosed with fibromyalgia, chronic fatigue, Hashimoto’s disease, and depression and anxiety, among various other chronic illnesses/disorders.

Chronic Illness and Disability on the JET Program

What are your symptoms like?

Well it varies for people depending on the severity of their symptoms, but for me, it means that I am in pain virtually every moment of every day. Sometimes it’s excruciating, other times it’s just an annoying, deep hurting, but it’s always there in some form or another.

The other big issue is fatigue. It’s much deeper than feeling “tired”. I can’t remember what it feels like to feel well-rested or energetic. I’m constantly a varying degree of absolutely exhausted.

There’s a lot more to it, but those are personally my two main struggles.

 

Did you include information about your disabilities when you applied to JET?

I did.

I was very nervous to include it all so I can very much understand why a prospective JET would be too.

My strategy was honesty, with reassurances from my doctor written next to each illness. I know a lot of us are afraid to put that information down and not get accepted, but I wanted to be up-front and honest and I felt that I had nothing to be ashamed of or to hide.

I also wanted the JET Program to be aware of my limitations when considering where to place me.

I was sure to include a positive note from my doctor noting that I had been under treatment for six years at that point and that my health issues were “stable.” She was really kind and went the extra mile without me asking and wrote that she had no doubt that I would be a valued employee.

 

How do you think your JET experience has varied from that of the average JET?

Well, the life of someone with chronic illness will always be at least a bit differently lived than someone without that struggle.

Chronic Illness and Disability on the JET ProgramI like to tell friends and family about the “Spoon Theory”. This theory describes having an allotted amount of energy and when you run out of energy, you can borrow energy from the allotment you have for the next activity or day, but that means you’ll burn out eventually and not be able to complete tasks. That’s a good way to describe how I function.

So at work, I push through the day and give it my all, but unfortunately that leaves me without enough “spoons” (energy) to do other things.

I knew coming into JET that the majority of my energy would be invested in my work with very little allotment for anything else. That’s the price of working full-time. When I come home from work, I rest and sleep. I don’t often have time or energy for “extra” things. I spend a lot of my vacation time at home recovering rather than traveling. And I socialize a lot less than a majority of JETs because I just don’t have the spoons.

 

What has been your greatest struggle?

Guilt. I sometimes worry that I can never be the “perfect” ALT, no matter how hard I work. That’s often there in the back of my mind no matter how much my coworkers rave about what a “wonderful ALT” I am:

“Am I acting energetic enough?”

“Am I doing enough?”

“Am I enough?”

I sometimes feel like I’ve somehow cheated the kids out of having a “real” ALT. I stress out every time I don’t have what I see in my mind as the ideal ALT’s level of energy in class. I feel a certain level of grief when I can’t go run around on the playground with the kids like other ALTs. I feel guilt when I occasionally can’t muster the spoons to go help out at cleaning time. The list goes on.

But my ideas about this have gradually changed over my years on JET. I started thinking about it differently.

Chronic Illness and Disability on the JET Program

Sure, I can’t participate in sports at recess, but I can play cards and games!

I can make colorful posters to cheer the kids on at school festivals, to welcome new students to the school, to encourage them before entrance exams, or to celebrate their graduations.

I can make a sign for sports competitions and cheer the kids on with all my might while I wave the sign around like a fool.

I can teach English music in class and play the guitar.

I can create an English media library for kids to check out English music and books.

My second and third year have been more focused on my “can” list than my “can’t”.

And honestly, I’ve learned that a lot of the students don’t actually want an overly bubbly, hyper, (sometimes fake-seeming) ALT. A lot of them respond better when I’m mellow and talk with them as my authentic self.

 

Do your coworkers know?

The short answer: no.

Some of them know that I have Hashimoto’s disease because I was diagnosed with it here in Japan. I haven’t had the courage to tell people about anything else.

There are many reasons why I didn’t tell people, but ultimately my main reason for not telling them has been not wanting to change our relationship.

I am depended on by my team-teaching partners for an enormous amount of work, and I don’t want anyone to feel like they can’t give me that responsibility. I want to work hard and be dependable, and I’ve always been terrified of being tip-toed around.

 

What has been the response from the JET community?

JET community response has been a mixed bag. On one hand, I’ve had some nightmare reactions. These are actual things ALTs have said to me:

  • “You have a disability? Ha! If you do, then so do I! Hahaha.”
  • “I have a friend with fibromyalgia back in [country] and SHE can do [insert activity]. To be honest everyone is getting sick of your excuses for not doing things with us. People aren’t wanting to hang out with you anymore. You need to stop being this way.”
  • “I’m sure you could exercise more if you wanted to.”

 

On the other hand, however, are the champion friends and JET coworkers who rise to the occasion and surpass my wildest expectation of support:

  • “Here, let me lift that chair! I’ll help set up this table for the conference.”
  • “Don’t overdo it. Save it for your presentation later. I’ll be cheering for you!”
  • “Why don’t you take a rest for a minute? You’ve worked so hard today.”
  • “Want me to I carry your suitcase up these stairs? It looks heavy!”
  • “You’re not feeling well today? Let me know if I can drop anything at your apartment!”
  • “You work so hard and give us all so many spoons* every day. Thank you so much.” (*see earlier note on Spoon Theory. I’m not cuddling colleagues.)

 

How about the response from the local Japanese community?

The support from Japanese community members has been overwhelmingly positive.

I’m a member of a local choir and several of the women know. One woman in particular, a dear friend, went so far out of her way to find a book on fibromyalgia (a topic very unknown in Japan still), read the medical jargon-filled book, research online, and search for pain clinics for me, all without me asking for any of it. She sends me texts and letters asking how I’m feeling when the weather takes a turn for the worse.

This, by far, has quite possibly been the single most compassionate response I have ever had to explaining my life.

 

All-in-all, are you happy you did JET?

I am.

I’ve grown immeasurably during my time on JET, both personally and a professionally. I’ve had some truly life-changing experiences here. I wouldn’t be the same person if I hadn’t experienced the last three years. I’m more independent and confident.

I’m satisfied that I’ve succeeded at my job. I was able to chase my dream of living in Japan again and my Japanese skills have sky-rocketed and I finally know what career I might want to pursue come July. I even met my husband through the JET Program!

Ultimately, despite my challenges, I want to live my life to the fullest and tackle the goals that I have for myself. If I hadn’t at least applied for JET, I would have regretted missing the opportunity. I never want my disabilities to determine what level of success I can reach in my life. I won’t let the challenges determine my path.

 

Finally, any advice for prospective JETs with disabilities?

If this is something you truly want, I encourage you to research JET and consider applying. Here is my (lengthy) advice:

1) Making sure that you are in a physically, emotionally, and mentally stable state is key to ensuring your success.

If you find yourself struggling to stay afloat back home, taking another year to stabilize and applying the next year may be wise choice. And there’s no shame in that whatsoever.

2) Arm yourself with as many tools as possible.

Research Japan. If you have never been abroad or to Japan, research culture shock and cultural fatigue, and learn at least basic language skills. Write out and learn key medical care phrases. Print out cards with vocabulary or phrases you may need when ill. Prepare a small medical binder with any info you think is necessary to have with you. The more you can prepare yourself beforehand, the more secure you’ll feel.

3) Keep in touch with your support back home.

Sometimes people underestimate the emotional toll of moving abroad. Skype family and friends, email your support group, text best friends, post on forums, play MMORPGs. Anything! Just be sure to keep in touch and remember everyone is still there when you need them, even if they seem a galaxy away.

4) Make sure that you have a treatment plan firmly in place before you leave.

Also that you have coping skills to fall back on when things get tough. Make sure that your medicine and treatment plans are readily available in Japan or that someone back home is willing and able to legally and reliably send you what you need.

5) Be ready for challenges, but also be ready for wonderful things. On the other hand, don’t feel bad when you have to say no to things.

Some JET participants will push the idea of “Say ‘Yes!’ to everything!” as a means of pushing the limits of your comfort zone and experiencing things you might not have. While saying yes is instrumental, running yourself ragged within a month of coming is certain to be bad times. Remember to save your spoons and spend them wisely.

6) Stand strong and know yourself.

In any community we live in, we will always meet at least one person who treats us terribly due to our challenges. Try not to let those people hurt or influence you. You are strong. And you are worthy. And those people have no idea what they’re talking about.

7) Lastly, as annoying as it is to hear pre-departure…every situation really is different.

No placement on JET is exactly alike, so each JET has to find their own way to a certain extent, but there are resources at the ready: predecessors, fellow JETs, AJET, CLAIR, etc. In time, community members and coworkers will be there as well. Be ready to roll with the punches and take change and challenge in stride.

 

I wish you the very best of luck! If you have questions, please post them in the comments. – S.Baggins

Chronic Illness and Disability on the JET Program

Other Useful Articles:

JET Teaching in Japan

Essential Japanese for Expats

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