Preparing for Travel With a Chronic Illness

Featured in the May, 2013 Scleroderma, Vasculitis & Myositis eNewsletter

We usually think of traveling as an experience to be enjoyed: a time to relax, de-stress, “get away from it all,” as well as a time we might share with loved ones.

However, chronic illnesses, such as scleroderma, vasculitis, and myositis can pose potential obstacles to your enjoyment. It can feel challenging, both emotionally and from a practical standpoint, to be in new surroundings, faced with unexpected situations. It is important to take the time to prepare and anticipate your needs, know your rights, find accessible accommodations, and pace yourself. Following the tips below can help ensure that you will fully enjoy your vacation.

How do I begin to plan for my trip?

You may be planning a trip on your own, or with your partner, family or friends. When planning with others, consider planning together. This way, you can include the plans that can help you manage best physically. Talk about your needs and mutual expectations directly and ahead of time to avoid misunderstandings and conflicts.

Some travel agencies specialize in making arrangements for people with special needs. Four web sites that may be helpful are listed at the end of the article.

You want to be sure that the places you plan to visit are capable of accommodating your disability-related needs. For example, you may want to ask:

  • Are there ramps, wheelchair-accessible entrances to cultural and public facilities?
  • Are there places to sit and rest?

Consider the timing, and climate of your travel plans. If you know you are prone to a flare at certain times, try to take this into account. Decide on what you think is a reasonable length of time to be away, and pace your activities. Be aware that some sunny locations can be a source of flare ups for people with certain chronic conditions. If you must limit your exposure to the sun, avoid traveling to a place with a hot climate.

If you are concerned about not knowing how you might feel at the time of your trip, you may want to purchase travel insurance. Be aware of any limitations regarding pre-existing conditions, and read the contracts carefully. Some insurance plans cover pre-existing conditions if the insurance is purchased within a specific time after you make your original travel deposit. This can help in case you may need to cancel, interrupt, or reschedule your trip.

What medical issues should I consider in preparing for travel?

Inform your doctor/healthcare team of your travel plans. They may have some specific suggestions for you both for practical assistance and to minimize stress about any needed care. Find out what medical services are available in the area and how you would get to those services if needed.

Learn where the nearest hospital is located, and if there are physicians there who understand your illness. If not, get referrals of physicians from your own doctor, or find out from other reliable sources. Also carry a list of emergency contacts with you, as well as an explanation of your illness. This is especially important if you have a rare illness. Healthcare professionals may not be familiar with your medical condition, so carrying an explanation can be helpful. This list should be updated to include information of where you are staying during your travels.

If needed, wear your medic alert device, or consider getting one. There is a number that can be engraved on the device so that healthcare providers can call and obtain important information about your illness.

Remember to check if your medical insurance is accepted in other countries. Some companies provide good medical coverage abroad at a relatively low cost. In case your luggage is lost, always carry with you a list of medications that you are currently taking in their original containers.

How can I best prepare for weather and weather-related conditions that may occur?

Check the weather forecast in advance and pack accordingly. For those concerned about natural disasters in the area where you are traveling there are two agencies available that provide guidelines to help you prepare:

What are some helpful suggestions in getting to my destination?

Plan direct flights rather than stopovers or changing planes. Call the airlines ahead of time if you must carry more than the usual allotted liquids allowed (medications), oxygen, or other related equipment. You want to anticipate exactly what you will need to do to avoid a problem once you arrive at the airport. Airlines can provide refrigeration for your medication, if needed.

As a person with a disability, it is important to know your rights when flying. The Air Carrier Access Act details the rights of air passengers with disabilities.

Amtrak (train travel) has a special services desk that can be very helpful in accommodating your needs.

If traveling by car, plan to stop every one to two hours to get out and stretch for a few minutes. This can help minimize the pain and stiffness that can occur when sitting for long periods of time.

If camping, prepare adequately for difficult sleeping arrangements. This can include:

  • learning how to get up from very low sleeping positions
  • remembering to bring insect repellent
  • learning the layout of the land to in order to negotiate facilities in the dark

Can hotels or other accommodations provide me with the things I might need?

Confirm your arrangements with the hotel yourself, even if you are using a travel agent. This can help minimize having to deal with the unexpected.

Another useful tool is Google Earth. This web site allows visitors to zoom in on a specific area, restaurant, hotel, etc., and gives you a picture of any external obstacles, such as stairs.

Know Your Rights

The Americans with Disabilities Act (ADA) states that all public accommodations (hotels are included in this category) in the United States must comply with basic nondiscrimination policies that prohibit exclusion, segregation, and unequal treatment.

Hotels must provide barrier-free rooms and bathrooms. They must provide barrier-free access within and out of the hotel. In the United States, hotels may also provide travelers with items such as raised toilet seats, grab bars, tub chairs and walk-in showers. If you call in advance, they may also have wheelchairs and scooters available.

Consider how far a hotel may be from transportation that you might need and how you can access that. It is helpful if the hotel has a restaurant and/or room service so that you do not need to leave the hotel if you are not up to it. A refrigerator in the room is also helpful for food and medication storage.

When making hotel reservations, it may be helpful, depending on your physical needs, to ask for a room near the elevator and on a lower floor. This can be useful in case there is an emergency that requires you to take the stairs. The hotel staff can help you faster if you are closer to the lobby. Let the front desk know if you have difficulty walking, to see what type of assistance is available in case of an emergency.

Outside of the United States, be sure to check, before you travel, what kinds of disability-related accommodations are available.

What other advice might be helpful?

Make sure to drink enough fluids. Also, have food with you if needed to take with medication.

When packing, remember to include a flashlight and nightlight, in addition to comfortable shoes, clothing and assistive devices.

What are some other resources?

These are travel agencies that may be helpful in making arrangements.

*Please note that these sites are offered for general information purposes only and are not intended as recommendations or endorsements.

Planning ahead, being prepared, and recognizing and adapting your trip to take into account your specific physical needs, can help reduce stress and minimize discomfort to help you get the most from your travel experiences!


Suzan Fischbein, LCSW
Coordinator, Myositis Support Group, Hospital for Special Surgery


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