7 Tips for Traveling with Lupus

When I was 20 years old, I was diagnosed with Lupus. Over the next 10 years, I lived in denial, suppressing it and pushing through with life. Living with a chronic illness requires you to make intense adjustments to your everyday life, and if I wanted to continue traveling, I’d have to own it and do what works for me. The following tips have truly helped me:

1) Get There a Few Days Earlier

While I still love solo travel, I usually travel with at least one other person. Because I work remotely, I have more flexibility. I decided to get there three days earlier than my friend on a recent trip to Paris. This was strategic. It allowed me time to recuperate and rest. A day of traveling can easily knock me out. When my friend arrived, I was rested and ready to take on Paris activities. While having to spend my first three days in Paris “resting” was annoying, I knew the long-term goal. I spent most of my time in coffee shops in the neighborhood and reading. I was staying with a friend in this case, so the housing cost was not a factor. So if you have the flexibility and it makes sense financially get to a destination a little earlier, even if it’s a few hours.

Champs- Elysees Clemenceau train station in Paris

2) Pack Light and Be Organized

I’m a notorious over-packer. However, stress is a massive trigger for my Lupus. One of the things that cause immense stress is lugging around heavy luggage and frantically searching for things. I now confine myself to a carry-on and a book bag. I sit and make a list of essentials. I organize an insert that I can place in the back of the seat in front of me that includes my headphones, medication, tea bags, and antibacterial wipes. Items like an electronic travel organizer is a lifesaver.

3) Get a Medical Bracelet.

Getting a medical bracelet is still on my to-do list, but having one is especially important if you travel alone. You can add relevant information on a medical bracelet, like your name, date of birth, allergies, and medications. You should wear this at all times. Most are waterproof; you can customize the design with American Medical ID. You can get one for as little as 35.00 dollars or as expensive as $500 if you want fancy silver or gold.

4) Overpack Medication.

I take a lot of medication daily, I have this organized in pill pack by day and time. I also set a reminder on my phone. Some medications, like Prednisone, can have severe effects if a dose is missed. I learned this the hard way during a trip to LA a few years ago; I forgot my Prednisone and didn’t think it was that big of a deal. I got sick and didn’t realize that was the reason until I followed up with my Rhuemo a few weeks later. I’m alive, but missed dosages are nothing to play around with. Also, never pack meds in checked luggage; always keep it with you. Also, keep a ship-ready box of meds labeled with a close family or friend. If the medication is lost, someone can take it overnight. This is a cost you may want to consider.

5) Use TSA.

Contact TSA’s helpline 72 hours before your scheduled flight. The TSA Cares helpline assists travelers with disabilities, medical conditions, and other circumstances during the security screening process. If you require security screening accommodations or have concerns about the screening process, TSA Cares can coordinate assistance with a TSA passenger support specialist who can provide on-the-spot assistance at the checkpoint. Also, you can apply for a TSA pre-check. You want always to be mindful of preserving your energy. And if you don’t have to remove your shoes, etc., that can save energy! There is a fee, but it could be worth it if you travel often.

6) Communicate with your Friends.

This is a hard one. For 10 years, I barely talked about it, but now I’m starting to be more open. It still feels uncomfortable. But people can’t help you if they don’t know how to help you. This is especially important when traveling with a group. Now, I have a conversation about my severe symptoms and perhaps activities I can’t do. I explain that my symptoms are unpredictable; I may be full of energy and then crash severely and need to rest. I also want to clarify that they don’t need to cancel activities when this happens. It’s about creating a balance where your friends know how to help, and everyone has an enjoyable time. I have situations where when I didn’t take the time to explain my symptoms, my friends felt they were doing something wrong, and it had NOTHING to do with them.

7) Get Rid of FOMO.

There’s a lot of pressure to maximize the day when traveling, which can be challenging with fatigue. So don’t overplan! I’m a notorious planner, so this is hard. I started to do group activities because having no plan stresses me out. I might do group activities with “cultural,” “sightseeing,” etc. Then, you can decide what makes sense each day based on how you feel. You might consider traveling to places like islands where you’re supposed to rest. Places like Europe require a lot of energy, so please remember when deciding on a destination.