Like so many of the inspiring travelers whose journeys I follow, I found Amanda on social media. She had posted about her story, someone had shared it, it popped up on my wall, and the rest is history – so to say. Amanda has a story, that I immediately knew needs to reach more people around the world. People who are in the same situation as her; and those who experience life very differently.

When Amanda – or Rae, as she also likes to be called – was 16 years old, she was diagnosed with Chron’s Disease and Systemic Lupus Erythematosus. Chron’s Disease and Lupus are both chronic auto-immune diseases which mean the immune system attacks itself causing damage and inflammation to the gastrointestinal system, tissue and major organs. These cause fatigue, chronic pain, permanent tissue and organ damage, pain, anemia, diarrhea and the list goes on.

Despite all this, Rae set out to travel the world on her own in 2015. And this is where her story starts.

Travelette of the Month: Amanda Rae - Defeating Lupus & Chron's Disease

How did you get into traveling and how would you describe your travel style?

I got into traveling after my divorce was final. I was in an abusive marriage and had to start all over after leaving him so I wanted to challenge myself. I booked my first trip outside the United States to Cambodia then I applied for my passport and doing research. I did it all backwards!

The way I would describe my travel style is very spontaneous, solo, adventurous, daring and frugal. I love getting out of my comfort zone, meeting new people, exploring, learning about the culture and saving money the best I can. And I absolutely love traveling alone!

Did you ever face challenges from friends or family regarding your determination to travel?

Yes, definitely. Obviously, everyone was worried about my safety as a woman traveling alone in foreign countries, but their biggest fear was my health and something bad happening. My response was “I’m gonna do it. Nothing will stop me.” I’ve always had that determined attitude since I was a young kid, I just do what I want.

Also, I promised myself after I was diagnosed that I wouldn’t let these illnesses define me or my life and that I would live my life to the absolute fullest regardless.

How do your diseases affect you physically?

In 2016 the medical treatments were not working anymore so I was told my last option was surgery where they removed my entire large intestine due to pre-cancerous cells and the disease spreading throughout my colon. They had to pull my small intestine out of the side of my stomach and attach a bag so I could empty my waste. This is called an ileostomy. I had surgeries recently this year to take it down and reattach what’s left of my small intestine to my rectum so I can go to the bathroom “normally”. However, I still struggle with my diseases and will continue to face obstacles in life.

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What do you think are some of the greatest myths about traveling with Lupus and Crohn’s Disease?

I think the greatest myth about traveling with a disability, in general, is just the fact that we can’t. Which I can understand how some may think that at first, but in my opinion, the fear of the unknown world is a disability in itself. We all should always challenge ourselves to think outside the box positively regardless of disabilities or not. I think creativity and improvisation play a huge part in living life with a disability. For example in my case, I always had to pack extra medical supplies, carry wipes, an abdominal binder to hold my bag from leaking and more. I wrote about my tips on my blog.

What were some of your favorite travel destinations?

It’s hard to choose but I would say Cambodia was my favorite travel destination so far. It’s beautiful, cheap, adventurous, colorful, full of amazing culture and history, helpful and accommodating people and I had the best experiences there. I made so many friends that will be lifelong and I had the opportunity to volunteer with the YMCA street children and donate toys! I can’t wait to go back and visit!

Cambodia isn’t a problem for the disabled in my opinion but bathroom access is limited so keep that in mind and it’d be wise to keep any needed medical supplies with you since medical care there is very limited as far as quality and availability. The food was all unprocessed, fresh and healthy so I didn’t have any issues with flare-ups.

The Philippines is amazing as well! I actually live there also – I go back and forth to there from California, USA when I’m able to. The Philippines is pretty developed in the cities and very accessible for the disabled (elevators, ramps, healthcare, pharmacies, bathrooms, etc.). But keep in mind, these are third world countries with a lot of poverty and corruption, so that should always be a factor when traveling with a disability.

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What can the travel community do to be more inclusive?

Well, I understand those of us with disabilities are the minority, but I get most insecure when I see people posing in their swimsuits and swimming. When I had my bag, I wasn’t able to swim much for fear of it leaking or falling off (which it did but that’s another story). Also, it was physically and emotionally difficult for me since I had a bag and scars that I was embarrassed about.

Another point is trauma especially for victims of violence. I was robbed and attacked once and it brought back so many painful memories that I couldn’t leave my hotel room the next day. I think if blogs or travel businesses could possibly provide information or rankings for countries that are the most accessible for disabilities, that’d be awesome! But for now, that’s why we have bloggers like myself that can share our first-hand experiences with others and hopefully bring more awareness.

Do you feel well represented in travel media?

It’s almost non-existent since it’s not talked about very much but disabled travel is a lot more common than people realize. The more exposure there is, the more we can inspire others to travel and my biggest thing is being a positive role model for young, disabled children since they’re always sheltered from getting out there and doing things. My dream is that maybe one day a young girl with disabilities can see my picture and article in a magazine and think “wow, she’s traveled everywhere with her illness all on her own! If she can, so can I!” That would be awesome.

Travelette of the Month: Amanda Rae - Defeating Lupus & Chron's Disease

What is important for you when it comes to passing on your passion for travel to others or maybe one day, your children?

If and when I do have children, they’re definitely coming with me to travel and I’ll make sure to teach them everything I can about the world. I believe you can learn so much more through traveling than you can in a classroom. Education is important to me but the experience is the best teacher.

What advice would you give other travelers?

For every new place you are visiting, put your phone down. Take it all in. People watch. Put your camera away and keep all the beautiful scenery in your memory. Skip the binge drinking and sit down somewhere quiet with a cup of tea. Be present in the moment. Dare yourself to hike that mountain, talk to those other backpackers in the hostel, go surfing, rent a motorbike and explore, play a game with the locals… you’d be surprised by how much you learn about yourself. Put some smiles on the children’s faces and do something for them that they’ll never forget.

And always, always remember this quote by Helen Keller, “Life is either a daring adventure or nothing at all.”

Do you have any travel plans coming up?

Right now, I’m focused on recovering after my recent major surgery and hopefully get back into traveling. I’m still working on starting my nonprofit organization in the Philippines and I’ve been wanting to visit South America and West Africa as well. My bucket list is always growing but my top 3 is to climb Mt. Kilimanjaro, volunteer at a sloth sanctuary in Costa Rica and volunteer with disabled youth worldwide.

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Thank you very much for sharing your story, Rae!

Follow Rae’s musings on her blog!

 

Do you also have a great story to tell? I’d love to hear from you at kathi@travelettes.net!