Traveling with an “invisible illness” is so often misunderstood – if you can’t see it, then is it real?  I’ve found for the many with autoimmune diseases,  traveling adds a few extra layers of planning (and clothes), stress and a plethora of “what if” scenarios.  Your diagnosis is not who you are, it’s a part of you and it should not hold you back from traveling in my opinion.  There are many resources to help as well as other travelers sharing their stories.   I recently wrote about Traveling with Lactose Intolerance and the reasons I’m not food adventurous.  As I get older, I hear of more and more friends being diagnosed with autoimmune illnesses like Lupus, Celiac, Hashimoto’s (Thyroiditis), etc. and being frustrated on a daily basis with life but even more lost when it comes to traveling with autoimmune diseases.   I’ve asked a childhood friend and writer, Christine Obst, to share her story about her autoimmune journey traveling with Lupus (and additional diagnosed conditions) as well as travel tips that have helped her continue to explore the world.

As with anything medical, please consult your doctor first before embarking on a holiday (vacation) and know that your experiences may be different from Christine’s and others diagnosed with the same autoimmune disease and conditions.

 

Traveling with Lupus by Christine Obst (Guest Post)

Receiving a diagnosis of SLE (Systemic Lupus Erythematous) at the age of 31 was a blow. Adjusting to life style changes has been a depressing journey, however, I was not one of those people who would take it sitting down. Travelling was still on my list of things I wanted out of life and after pulling myself up from the floor, I renewed my promise to myself to see those places I had longed to see, although my diagnosis was toppled with RA (Rheumatoid Arthritis), Fibromyalgia, Osteoporosis and Raynaud Syndrome, I managed to research and “tone down” my expectations.

Understanding the illnesses was the first part of my research and knowing that everything is autoimmune was an eye opener. Inflammation in the body and brain is the basis for most illnesses, including Cancer. My body is constantly inflamed and there are several things that can cause inflammation such as stress, food, medications and environment. With these things in mind, I plan my travel carefully and offer this advice to others with autoimmune illness:

• When booking flights and hotels, it’s important to try to book a direct flight. Although it may be a long one, changing planes with brain fog and pain can be a challenge. If you can get a direct flight for a reasonable price, choose the aisle seat and get up every hour to stretch. Along with drinking water, this will relieve some of the puffiness in the arms and legs as well wake the brain during flights.

 

• Airplane food is nasty; lets face it, but if you can, order (on international carriers) the gluten free option when booking your flight. Although I am not following this diet, food with GMO’s and high grain intake can cause inflammation. Bring fruit and other healthy snacks with you during your trip to avoid having to eat what’s offered on the plane and in the airports.

 

• Buy the insurance when booking! Whether you book through a travel agent or an online service, always buy the insurance. You never know when the flare up will be so bad you will be incapacitated and have to reschedule or cancel all together.

• I often use Airbnb for places to stay (in the U.S.), but usually book a hotel when going overseas. Both are great as far as communication is concerned. It is generally easy to contact a hotel manager or Airbnb owner prior to arrival to ask questions and to address any complications that may arise during your stay. When staying with a hotel, I usually ask for a late check out or early check in and make sure I am placed close to the elevator. If there isn’t an elevator, which happened to me in Portland, ME, move on. It’s not worth it.

 

• Lately, I’ve been concerned about my medications. I take about 5 prescriptions a day, plus supplements such as multivitamins, Osteobiflex and Turmeric, so my worry was that if these were not in the actual prescription bottles, would they be confiscated at the airport? On a recent trip to Germany, I found this wasn’t the case. I have a cute pill container for the pills and have yet to be questioned about them. What also puts my mind at ease is that most countries offer my drugs over the counter so if I lose my meds, I can call a local apothecary to see what they carry and get a weeks supply.

For US Travelers – TSA Packing Your Medication

For UK Travelers – NHS Can I Take My Medicines Abroad?

• Most of the destinations I would choose for travel are within Europe, but I have been to Egypt where local hospitals are few and far between. This concerns me when going away so I do a quick search for hospitals in the area where I will be staying. Fortunately, socialized medicine is offered in most countries and they are (believe it or not) more up to date with what is happening in the autoimmune world than the United States. I am comfortable going to Europe, knowing they know how to handle my needs as a patient. With that said though, I plan for flare ups by making sure my medications are prepared and ask the hotel for things like ice and heat packs. If I need a rest, I take it.

 

• I have been fortunate enough to travel with family and friends who are aware of my situation. We plan accordingly, by splitting up days with equal tour and rest or plan tours with equal walking and sitting. I know my body well enough to know when I’ve had it. Usually my eyes start to glaze over and my brain stops formulating sentences, then I know its time to go back and take a nap. My sisters are especially accommodating when it comes to my illness. Choose your travelling partners wisely.

• I was never a beach person until recently which is funny because my illness is at its worst. Temperatures in the 60s and 70s are my favorite because heat swells my body and cold causes intense pain, but if I plan for the beach, I can have a good day. Sunblock, umbrella, hat, water and towels to cover up are essential. Get the idea of getting a tan out of your head; again, it’s not worth it. Be mindful of your surroundings and enjoy the view, the moment. That’s what life is about, so protect your skin. If you’re like me, the stain from sunburn will last for months and cause nausea and severe pain.
  • I once had a burn on my feet for almost a year, and that was from Wildwood, NJ! I required silver nitrate, which is what firefighters use for burns, in order to recover. I still carry it today, but am never without my 50 sunblock and Evian or Aqua Panna water.
  • I have friends whose Lupus is subcutaneous which means they show it on their skin all the time. They avoid the sun like the plague because of the possibility of blisters and rashes is too scary. They even have block out plastic for their cars to avoid the sun while driving. I used to get a rash on my face, but the infusions I have had over the last number of years prevents that from happening, however I am very susceptible to sunburn so I wear sunblock even in the Winter.

• Just a shout to water once again, if you don’t know, some other bottled waters contain chemicals like Fluoride. These chemicals are inflammatory and can cause a flare in those of us with autoimmune diseases. Choose your water wisely.
• While in your destination avoid those inflammatory foods if possible. I tend to give myself a break while on vacation so I have local pastry, sweets and alcohol. In most other countries, you don’t have to worry about GMO’s or processing chemicals because they do not handle their foods this way but some foods are just naturally inflammatory like chocolate, baked goods and alcohol. Be prepared for possible flare-ups, fatigue and headaches while on vacation. These can be controlled with medications and rest.

Adjusting to an illness is tough; it sets us back and can convince us that we cannot do certain things. I’ve decided not to allow this type of thinking to happen. I am not my illness and with proper nutrition, preparation and support, I plan on conquering that “bucket list”. You can too.

 

Thank you to Christine for sharing her personal story about Traveling with Lupus and other autoimmune diseases. I hope readers will find it quite helpful to their travels.

If you are traveling with Lupus and have tips to share, please comment below.