Healing: Pros & cons of living or seeking treatment abroad with a chronic illness

Memo: Above comes from my erstwhile “Healing Journal” – written/compiled on a foggy meandering journey to various countries (Pacifica, Phitsanulok, Cochin, Pokhara, Dikwella/Galle…) visiting all manner of hospitals, clinics and exploring various healing modalities and techniques.

Shared here more-or-less unedited for posterity (whatever that is) and to shed light to those struggling who might come across this riff. Please watch the “Healing Ramble, introduction” video for context on this series.

Importantly, this is not meant to be a travelogue or creative writing exercise, just laying out my experience as it came to me. I may include some links to other projects or creations that came out of this, maybe… I’m not there yet.

This entry was in Pokhara, Nepal, early 2017, written as a letter to someone i met along the way facing health challenges of their own. I never heard back but whatever…

(finally) organized and published spring 2022 – i now live in Japan, am stable if far from “normal”.  No comments, sympathy requested or accepted. Carry on. Note: There’s another post with a review and brief introduction to Ayurveda Health Home as well. 

daveo

Dear [Redacted],

I’ll speak frankly and candidly from my own experience, all of us are different of course – for the record I am at an Ayurvedic clinic in Pokhara, Nepal.

Background:

a medical diagram of me

Like you, and most everyone else with a chronic complex medical conundrum, I’ve spent all the time since my “trigger event” seeking out various treatments.

From overmatched GP doctors, to the anticipation of finally getting into see a “specialist” and the disappointment crash following when they still have more answers than questions, spending everything you got to see various naturopaths, chiropractors, reiki practitioners, massage therapists, nutritionalists… with little to no long-term benefit, spending sleepless nights reading medical abstracts & journals as though you understand them, seriously considering going in significant debt to go to a “fancy famous” hospital, putting up with family and “friends” advice (occasionally well-meaning) but always useless and often completely disrespectful, using up every bit of energy reserves on a daily basis just to get through the day and hopefully feel some vague sense of satisfaction or accomplishment when really you’re just spinning, seeing the stress it causes on lovers and partners who try their best to understand but crack under the pressure from time to time, and acknowledging your own mental well being — which starts to fragment from exhaustion, frustration and so many (often professional) people telling you that it’s “all in your head”.

I made a penciled flowchart of my various options before I headed out this last time, ergo:

(very frank) life options

Shall I do just what the Western doctors and insurance companies want me to do hide myself in a rainy apartment with old folks down the hall filling the lobby with smell of soup?

Go down in flames with late nights of parties and decadence pushing myself to the very limits knowing that it doesn’t really matter if I wake up tomorrow (I’m just not that self-destructive)?

Or, beg borrow and steal to see the litany of well-meaning but wholly ineffective naturopaths, chiropractors, Reiki practitioners, nutritionists blah blah blah? (I have largely done this and have fallen deeply into debt as a result)

Or do I continue this sorta strange wandering life of seeking healing in foreign lands while playing the “cat and mouse” game with the insurance thugs who wish to control me? I guess this choice won for the time being so i’ll break down the problems in the categories:

  • Financial (the cost of simply living coupled with the cost of getting treatment)
  • Treatment (access to reliable and useful services when you need them)
  • Climate (some of us do better and different weather, as well the “political” and social stress of environment)
  • Community (the first year or so it can seem that you have a support network but as years go on, this breaks down and begins to vanish having a net negative affect)
Global Brigadoon Index ™

My experience:

My “western diagnosis” is fibromyalgia and chronic fatigue syndrome/M.E. This all started in May 2013 so I’m coming up on four years. My diagnoses usually affects women and there is support groups etc. have been primarily women, bless their hearts.

Western specialists have advised me to apply for disability, go on meds (so many!), get my affairs in order, find a place to live out my days. Also, sign up for various kinds of cognitive behavioural therapy and some form of *gentle exercise* (Graduated Exercise Therapy)  if possible.

When I finally “hit the wall” and had spent all my money and every resource and every amount of energy through modalities mentioned above, I put my shit in storage, ended my domestic relationship (another huge challenge) and went to Thailand with the aim of gathering as much information as I could about my physical condition. I’ve had many lab tests in the past but, either would never see the results, wouldn’t understand what the results meant, or had doctors not sufficiently explaining them to me, and not having a copy of the data at which I “owned”.

At a regular “general hospital” in a fairly anonymous town in Thailand, with the help of their international liaison (many hospitals in Thailand seek out western patient but primarily for specific procedures and often cosmetic or sexual or experimental treatments) I went in daily for six days to complete different sorts of tests which were available in Canada with significant wait lists and Dr. permission problems, or in the US at significant cost. At this hospital I did 27 different blood tests including ones that home doctors were dismissive about (Including hormones, lyme disease, various amino acids, viral loads, autoimmune,… Beyond the usual battery of test I received in Canada), plus performed an EEG (I’ve had several fainting incidents where I landed on my head), MRI on my hips due to constant pain, and also caught up on immunizations required for the next step of my journey. And filled a couple of “emergency prescriptions” that doctors were hesitant to prescribe me as they wanted to give me other medications which I did not care for instead.

In the afternoons I went to a traditional Thai clinic for deep tissue massage as well as hot compress application and a herbal steam sauna.

The pros of this experience in Thailand were:

  1. I now own all the data about my blood test, EKG, EEG, MRI etc. I have the papers and the digital files and they are mine
  2. I felt like a relative VIP at the hospital, there was hardly any waiting, the practitioners were excellent, I did not feel disrespected or condescended.
  3. At the traditional Thai clinics, I was able to experience some immediate albeit temporary relief for my symptoms. In the US/Canada a massage is expensive per hour and an “hour” is usually about 40 minutes and another hour of filling out paperwork. In Thailand, going to a legitimate massage clinic (there are loads of “Tourist” massage as well as sexual massage…) was a fun experience as the therapist laugh and chat amongst themselves and go deep and hard to break up all kinds of old scar tissue and pain. Whether or not this would be the “prescribed” treatment is debatable but for me it brought some relief, especially when coupled with the hot herbal compress and herbal steam sauna. I at least felt I was getting/giving self-care to myself.
  4. The cost… Everything at the General Hospital was about $600 Canadian (about 450 US) including films, CDs, prescriptions etc.
  5. Nine sessions of the deep tissue massage etc. treatments (each one came with a short vital signs check in and so on plus a cup of tea and occasionally a hug :-) was about $150 Canadian total & each treatment was about three hours.

Cons:

  1. As chronic and complex diseases don’t have a “cure” as such, they are chronic and complex, I was not able to get consultative care per se. Certainly there are doctors available who would consult and advise on these complicated diseases but probably do not have any more knowledge than any other “western” doctor.

After Thailand, I went to the province of Kerala, India to a small Ayurvedic clinic run by a young couple of doctors.

Even for seasoned travelers, India can be a little intimidating but I had certain tactics to is the trip which all address later.

Also worth noting, before choosing this clinic I sent out about 40 letters of inquiry via email/Facebook etc. The clinics were often either geared for wealthy western “yuppies” who just wanted a relaxing spa vacation with some sort of treatment element and were very expensive, or were hectic and busy clinic’s geared towards local patrons and not necessarily understanding of specific needs of out of country patients. As such, I found one that was a “Goldilocks” fit.

I lived in the small clinic for three weeks and all treatment, room (which was cleaned and changed daily), and three meals specially prepared for my situation, and a variety of natural medications of all sorts.

Pros:

The Ayurvedic medical tradition goes back thousands of years and addresses health in a different way than treating the symptoms as Western medicine does. The focus is determining how your body is strong or weak and balancing out these various aspects of your body. There’s long complicated names for all of this which can be a little overwhelming and intimidating. Establishing trust with the doctors is key. There is a certain level of cynicism about western diagnoses to say the least, but there is also a deep respect for the medical tradition that they practice.

That said, it can be a little uncomfortable and strange. Various fermented oils, ointments, tinctures, medications of all sorts of different smells and tastes which don’t necessarily make sense to one’s brain at first.

While the clinic was clean and comfortable enough, the treatments were pretty intense… Various massages and hot compresses and inhalations and so on. While the doctors spoke English, the therapist did not so again trust was critical.

However, about 10 days into the treatment, I really started to feel a significant effect, in my case specifically my brain started *sparking* again and the “brain fog” began lifting.

I experience a lot of muscle pain which started to subside to some degree, they also noted various twitching of my legs (restless leg syndrome) and advise me to get an MRI on my spine. They were shocked I’ve never had one being from the US/Canada. I went in the next day, paid about C$110 for a complete spine MRI, received the results on CD, a written radiologist report in English, and the films and was out of there in less than an hour. Incredible. This information showed some prolapsed discs which they had some concern about, but at least it gave me more knowledge to share with doctors.

Because I lived in the clinic, all my meals were provided and I only had to take a few steps to the treatment room, to my bedroom, to the eating table, to the porch, I was able to completely let go of so much stress and the anxiety that comes with going back and forth to doctors visits, sitting in waiting rooms, hearing all the chatter, feeling rushed through the doctors consultations etc.

I felt contained and cared for and became “part of the family” and part of the local community in a way.

Cons:

As I mentioned, it can be a little disorienting and overwhelming with all these different treatments and opinions and words and inputs coming at you. Also, you are in a foreign country and when shit hits the fan, you realize you’re a long ways away.

In my case, the shit hit the fan when I got word that my beloved mother had died in Utah… It was the hardest 36 hours of my life getting from “Nowhere” India back to be with family and all of that. Of course this was jarring in the best of circumstances but it took me from “feeling decent” for the first time in a long time to thrown into a caldron of stress and sadness. As such it’s hard to get my bearings about the treatment but I definitely felt the best there that I had in years.

So, based on the above once I dealt with Mom’s estate and had to get out of the fcking USA and all the negativity and sadness and stress and so on (I’m a sponge for all of it) I went back to repeat some of what I did before.

But I ran into some problems… The international liaison at my hospital in Thailand had retired, she was still kind enough to help me but the hospital process did not go quite as smooth, plus there wasn’t much else for them to check. I did a few blood tests to see if some levels have changed in the interim. Also re-up some prescriptions and immunizations just because it was cheap and easy there.

The other problem was Visa to India was rejected for some unexplained reason. I had not expected this and as a result lost a bunch of money having to reschedule flights and change tactics.

So, i’ve checked in for another fortnight of almost comically absurd barrage of Ayurvedic treatments.

It’s a whole other routine and atmosphere from my previous tiny little clinic. In this case, I am one of five “guests” along with three women from Germany and one lady from Qatar. As usual, surrounded by middle-aged women.

The head doctor, floats between Kathmandu, here and foreign locales which he casually name drops like Bratislava and Hong Kong amongst his various chairmanships and vice presidencies of organizations and associations combining various medical modalities and intergovernmental medical relationships and august memberships of those with more letters after name than in name itself.

He examined me more closely than any doctor has in these last four years. I will leave that to your imagination but in general, he also read my mind, listened closely and took the time to meditate on what I said. First times for everything.

I’m three days in on the treatments and the pace they’re keeping me on is quite hectic in many ways: so many exercises and routines and cleansings and protocols starting at 6:30 AM. Usually the only time I see 6:30AM is at the end of an all-night bender but I’ve been duly diligent and curb kicking my preferred rock ‘n’ roll lifestyle to total commitment to the various eyewashes, neti pots of buttermilk, breathings and yogas and two fellas at once massaging me and beating me with balls of sticky rice.

Despite being in a thrifty country, I am breaking the bank on this one — more expensive than India foray — about $3000 Canadian for 2-3 weeks but, this clinic is much more comprehensive and I am treated constantly on a strict schedule with all sorts of therapies, lessons and treatments keeping me busy from morning till evening. Sometimes, I will have three people tending to me at once. The lead doctor is a wise man who travels the world sharing this knowledge, the junior doctors are wonderful kind and speak fine English and explain everything to me carefully, though much of the information is ancient knowledge and beyond my comprehension. 

The practitioners are young and hard-working and diligent. And again, trust is important as I do things like being put into a steam box, have two young men massaging me with some sort of gritty smelly substance or pounding me with bags of steamed rice, there was also very… intimate inspections… And applications ointments & processes which are a wee bit delicate. 

The whole basis of this is they are completely detoxify the body. I have a morning routine which includes buttermilk nose pots, eye washing with some magic potion, eye exercises, yogic breathing, and special dietary routines depending on which part of the colonic cleansing cycle I’m on and things of that nature. Basically, if the body is detoxified and all the organs are working properly, the body should heal itself or get to a point where you feel better. That’s the theory anyhow.

Cons:

Again, you are in a foreign country far away which can be fun generally except you’re living in a clinic and this healing process is your life and the outcomes are somewhat unknown. I had always dreamed of coming to Nepal to go on mountain trekking expeditions but here, I see people heading out on adventures and I’m here in a clinic with German ladies and the occasional group of medical practitioners on some convention coming through for a tour. I know my body requires this but still, I fight with the fact that I want to be out there in “the world”. I make up for this by doing a few gentle outings, but it’s like being at a buffet and eating only brussell sprouts.

The other “Con” of doing any of this is you are not a citizen of this place and require jumping through visa hoops. Americans-especially tend to think that they are “welcome” everywhere but that’s not necessarily the case. There are fees to be paid, passports to be stamped, time limits to exit which can require expensive flights, and always people who will take advantage of you. This is a cynical view in many ways as most people are wonderful but, there’s a difference between going somewhere for a “vacation” or a medical trip and expatriating yourself and planning to live in a country long term. I sort of run the fence between these two scenarios.

Don’t Read: My situation is that I receive a small disability stipend through a private insurance company through work. I am incredibly grateful to have this but, they put significant restrictions on what I can and can’t do and require all sorts of absurd medical appointments and check-ins which are frankly frustrating and often rude. They are also designed to “trip me up” and get me off of their roles, whether that means going back to work or being disqualified.

As such, I don’t share my location or what I’m doing publicly at all. I keep it on the down low as I don’t want other people’s opinion about “oh my friend is a doctor of this in wherever” or “while you’re there you really got to go to (insert awesome place here)”… I need to remove all the stress and concentrate on healing. This means that I don’t have a support system in place besides the people here that I surrender myself to. I show up with my bag, pay the money and they take care of me for the amount of time I pay them for. Then, I am just a guy in a foreign country going wherever next.

All that said, i’ve been a traveller for a long time and feel comfortable on the road and in foreign places. I’ve been sick in foreign countries (all kinds of stomach bugs and flus and so on) but still, when you get sick and you’re alone it sucks. In between Thailand and Nepal, I took a train through Malaysia and had a terrible cold for a few days. When you are holed up in a hotel, no matter how pleasant or interest in the location is, it sucks. You can’t find the medicine you want, the food you want, someone to give you a hug or look out for you.

To sum up:

Pros:

* Availability of care at low cost
* Quality and empathy of care giving a sense of hope
* A bit of adventure so it feels like you’re still “living” rather than just “existing”
* Real ancient alternative treatments rather than Western pill factories or overpriced and under-qualified practitioners

Cons:

*chronic and complex conditions are still chronic and complex condition and consultative care is still limited for these complex and chronic conditions
* you got to trust because you won’t necessarily understand – and it won’t necessarily be easy – treatments
* you are alone(ish) in a foreign country requiring visas and fees and stamps and requirements as well as language barriers
* when shit hits the fan, you’re a long ways away & when you get a stupid cold or other injury, you don’t have a support network per se
* travelling long-distance is called being in constant pain or low energy or other symptoms of chronic complex diseases isn’t easy

For me the Ayurveda is the best thing I’ve done for myself in the four years. I’m three days into this time around and it’s super fcking weird but it’s a very good idea. The trick is been able to live long enough somewhere cheap to cover the cost of the plane ticket and visas it takes to get here. To fly over and just stay two weeks and fly back will kill you for an expense. 

[specific addendum] If you have a partner it can be tempting to go together because he can help take care, but you need to have some sort of income. in some cases you can do this “long-term” and get job teaching English but it’s still a job.

2 thoughts on “Healing: Pros & cons of living or seeking treatment abroad with a chronic illness”

  1. As a fellow SEID/FiBroCFS/ME medical tourist , I resonate fully. It’s so important for more “Goldilocks Zones” as you put it to emerge. This is what I was lacking in Sri Lanka and why Ayurveda didn’t work for me. I was staying in an AbnB in Mount Lavinia with an expensive German Ayurvedic retreat spa on my left who come for a 6-week max pampering , and on my right a totally free of charge pay what you can Ayurvedic clinic that’s meant for locals who were down with really serious emergencies. I felt guilty taking time from their doctor and nurses on me, nor felt comfortable to stay the 6 months i was told I needed to commit. What is needed is something in between for middle income folks like me who would gladly pay for the no frills basics of a place that caters to them in English and has communal housing and support for 2-3 months, with a visa status by authorities for them to stay that long.

    1. You’re absolutely spot on on this (naturally) – another post is coming about my time in Nepal which was the “best all arounder/ Goldilocks place” in that you could live in patient so don’t spend that energy going back-and-forth and it was well appointed, safe and comfortable (a Nepal – German joint venture) but fairly reasonably priced. Within this “healing ramble“ series there’s two places in Sri Lanka I stayed, one was the semi boutique style with rather in different doctors and the other was to pay what you can but was a little bit disconcerting to be taking cycles away from other people.

      My Ayurveda doctor in India is now working on an MBA with an eye towards medical tourism so I’ll remember to share the survey with you and others.

Whatcha think?