Wanting to Live Abroad, but Blocked by Lupus
As I sit writing this in a small pub in Edinburgh, Scotland, I’m both elated and disheartened. In the last 28 days, I’ve traveled in 10 countries throughout Europe, falling more and more in love with each destination I discover. My love for the world has swelled to truly epic proportions. But I’m a little upset because I know that, at least for the foreseeable future, no matter how much I love a place, lupus is likely to stop me from living anywhere but Australia.
I feel as if I leave a little piece of me wherever I go, but some places, for whatever reason, steal my heart. I’ve only been in Scotland a little over 24 hours and she already has me completely wrapped around her little finger.
Even though the summer temperature is nothing remotely close to what I’m used to, and I’m having a little trouble with the Scottish accent, I’m in awe of this beautiful country and would love to live here for an extended period. But that is unlikely to be an achievable reality for me in the near future.
My sentence with immunosuppressants is at least two years without parole, non-negotiable. And as long as I’m forced to buy boxes of CellCept in batches of 150 at a time, I can’t afford to live anywhere but my own country.
Don’t get me wrong — Australia is the best country in the world. It will always be my home. I love it and I’ll be unapologetically biased and completely patriotic about that! But on a completely serious note, the healthcare system provided to every Australian citizen is beyond amazing, not to mention a huge part of the reason I have the ability to live the life that I do.
As an Australian, I have major subsidies applied to a lot of my medications, most notably a reduction from nearly $300 to about $40 on the immunosuppressant CellCept. If it weren’t for the national healthcare system in Australia, there is no way that I could afford the medication essential to stopping lupus from trying to kill me. And this means that until it’s decided that I’m healthy enough to live without heavy-duty medications on a daily basis, Australia is the only place I can reside.
Please don’t take this as whining. I’m very aware of how good I have it, and that many others are not nearly as lucky when it comes to national healthcare, especially Americans. I’m incredibly grateful for all that’s available to me. I know that if it weren’t for my nationality, I would have unimaginable amounts of debt for the rest of my life trying to afford the medication essential to keeping me alive.
But I do feel a little disheartened. Though lupus has stolen so much, I’ve fought tooth and nail to keep traveling, regardless of what it might cost me. The downside to traveling is that I can’t fall out of love with the countries and the memories. I’m perpetually longing to fill my heart with the emotions and the experience that only the unknown and the unfamiliar can bring.
I’ll keep crossing my fingers, toes, and whatever else that one day I’ll have enough of a handle on my chronic illness that being an expat — even temporarily — becomes a possibility. Maybe it won’t be, but only time will tell. In the meantime, I can’t help but remain painfully optimistic that one day all the scary and wonderful things that go with moving to a completely different country will be my reality, and I’ll get to call beautiful Scotland home.
***
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to lupus.
About the Author
Comments
Eleanor
I am British with lupus but I live in Spain - I was diagnosed in Spain last year, spent the summer in the UK to recover, but came back, and I'm planning on living in Berlin for 5 months in the winter. Lupus is different for everyone - but it is possible to make the leap!
I understand it's important to access healthcare you are comfortable with, but the NHS is really good, my UK doctors are amazing. Health insurance is another matter, I choose to stay in Europe so I can use my EU health insurance everywhere. I am still currently too scared to see what my travel insurance will be outside the EU. But if you are working in the UK, you should pay National Insurance, which will cover your NHS needs!
Maybe not now, but I hope you can one day live in Scotland, it really is beautiful!
Kristiana Page
Hi Eleanor,
Thank-you so much for your comment, I really appreciate it! Your information is incredibly helpful and one day may aid me in living out my dream of moving to Scotland! :D
Good luck with moving to Berlin, I was just there and thought it was such an incredibly interesting and amazing city!
Best,
Kristi
Eleanor
Thank you! I've never even been to Germany so I'm excited. Glad I could be of some use! Really hope you get to live your dream, wise that you put lupus first though, I just hope you can allow it to fit in with your goals! And Scotland really is lovely despite the weather
Kristiana Page
Oh, you'll love it! Such an eclectic but amazing city! The history is unbelievable and Germans are a wonderful people!
Don't know what your dietaries are like but if you can, make sure to try spatzle (it's truly delicious) and visit a beer hall - even if you're not a beer lover, it's still a tonne of fun! :D
Best,
Kristi X
Eleanor
thanks for the tip! I must definitely try at least once, never heard of it but it looks good! And beer is always a must ;)
Taneesha
Hello!
I have found myself here whilst searching the internet desperately trying to find answers to my questions! For the past two years I have been living with a set of symptoms that was originally thought to be fibromyalgia/chronic fatigue. However, I’m awaiting my next appointment to get an official diagnosis but I have been told it looks like SLE, and to be honest my symptoms are exactly like those of SLE.
My problem is, ever since I was a little girl I have always wanted to live in Australia. My plan was that when I finish uni next year, I will get a working holiday visa and travel to Australia and live out my lifelong dream! Haha. But since all of this has been happening with my health I am terrified that it will stand in my way. I have read that there are health requirements to getting a visa for Australia but it doesn’t go into specifics, so I don’t know if lupus will stop me being granted one?
Also I have been advised to apply for personal independence payment, which here in the U.K. is like a disability benefit that you can receive whilst working as it’s not means tested, it’s just designed to be like a top up to help you live independently with a condition. So also I’m worried that if I am on some sort of benefit then that may affect my application being granted too?
I’m not worried about paying for medication as I’ll have insurance before I come. I’m just wondering if you know anything about any of this?
Thanks in advance,
Taneesha
Emmanuelle
I'm Australian born overseas,Belgium where my sister lives with the challenges of Lupus.
I relate a lot to this letter as I have learned to understand the devasting effect Lupus has in their lives.
I hope by joining Lupus news today I can understand better how to help her.
Kristiana Page
Hi Emmanuelle,
I hope we're able to assist you in better understanding the challenges your sister faces with lupus :)
I think it's an incredibly heartfelt gesture that you've gone out of your way to understand what she goes through and I'm certain she really appreciates that!
Best,
Kristi
Nancy
Hi I live in USA and I wish I could move to Guatemala, the weather is amazing is less pain for me, but no medical insurance. Don't loose hope.
Kristiana Page
Hi Nancy,
You and I seem to share the same longing, but I remain hopeful for the both of us that one day we'll manage to achieve our dreams, despite our god-awful illness.
Stay strong, you've got this! :)
Best,
Kristi X
yin
Hi im an asian who had been diagnosed with lupus too since 2008 where i'm just 9 years old and now its 2017 and i'm 18
I kinda dislike this because my only dream is just to further study abroud it just make me want to give up when everything you do is stuck with lupus
Gloria
I found this entry because a I googled “living abroad with lupus.” I was taken aback at the photo of Edinburgh. I am an American and was living in Edinburgh, after years of dreaming and planning, when I got sick. It took nearly three years to identify what had suddenly cause me to become bedridden and screaming in pain Lupus/Sjogren’s. I lost my job and had to come back to the US. I hope every day to get back to Scotland - my one true love in the world. I’m glad you got to experience it, and hope for both our sakes we can find a way there. I had only been sick six months when you wrote this, and was just about to leave Scotland forever, thinking I was going on a short medical leave from my job. I hope in the last two and a half years you’ve had some better luck and found a way to make the leap abroad.
Sara M
I'm mexican and I've always wanted to live abroad but my ex husband never wanted to, i got separated last year so it was the moment to bring this up again, however on last Dec i got my dx for lupus, thinking about moving out to a different continent, alone, with this disease....sounds completely crazy, but damn I want it so bad!! Still thinking if it's a god idea, so confused!