News & Advice

How I Travel With My Invisible Disability

Never forget that you're the best judge of your body.
Airplane
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Traveling with a disability can be a nightmare—wheelchairs are routinely damaged in transit, for starters, and passengers can often be stranded after landing when airport staff due to collect them never appear. Traveling with invisible disabilities, however, has a separate set of issues. Whether you have chronic pain or MS, cognitive or hearing difficulties, arthritis or are simply post-surgery and unable to lift, travel—air travel, in particular—poses specific challenges: long lines at passport control; steps up to or down from the aircraft; interminable walks to the gate. Not to mention the scramble that is the boarding process. Often, it becomes too much before you’ve even reached your destination—compounded by the fact that travelers with an invisible disability are sometimes met with skepticism over their needs from passengers and staff alike.

I’m a frequent flier with a genetic condition that can result in dislocated limbs if I lift my suitcase awkwardly, fainting if I stand in line for too long, and chronic pain and physical bruising caused by anything from manspreading seatmates to routine pat-downs at security. It can be tempting to push through it without asking for help, especially when a simple request for assistance can come with multiple questions from airline staff. But as I’ve learned, even if an unassisted journey doesn’t end in injury, it almost certainly will in exhaustion. I’ve honed my travel strategy to a T since I was diagnosed in 2012, when I was already a frequent flier. Here’s what you need to know.

Plan in advance

Long-haul flights are draining for anyone, but they can also provoke flare-ups of conditions, so build rest time on arrival into your itinerary. If you’re traveling with others, warn them you may duck out of first-day activities; if it’s a work trip, I always fly a day ahead of everyone else so I can rest. Time your flight to arrive in the evening—you can play dinner by ear, then hit the hay without feeling like you’re missing out.

Your pre-trip plans should also include booking special assistance at the airport. Call your airline directly to find out what it offers travelers with special needs. You might be surprised: Southwest, for example, doesn’t advertise this on its website, but it’s sometimes possible to apply its ‘customers of size’ policy to those with disabilities, meaning you can purchase two seats ahead of travel and keep the one beside you free during the flight (the second fare will be refunded afterwards). I used this option several years ago and although the policy has officially changed—Southwest now says it’s only applicable to passengers who physically need that extra seat, whether they have a large service animal or they’re required to lie down during the flight—I was still able to request this recently through customer service. So it’s worth calling to see if the agent can add it to your booking—it may come down to who you get at the other end of the line.

If you’re flying transatlantic, Virgin Atlantic stands out for its exceptional training of staff around disabilities—including dementia—which can result in a considerably more pleasant flight. Flight attendants are aware of special needs and how to react to them, from assistance you might need to the bathroom, down to the simplest things, like crouching to be at your level as you speak. Passengers in the U.K. can visit the Virgin Atlantic rig at Gatwick airport to get comfortable with the plane layout, which is particularly useful for those with autism who want to experience the environment of the plane pre-flight. Jetblue, meanwhile, offers an escort service for passengers with autism, dementia or Down syndrome, or allows them to bring a designated companion through security and right up to the gate, if they prefer.

Be open about your needs

If you’re lucky enough not to need assistance in regular life, asking for help while traveling can feel counter-intuitive. It may feel like the opposite—particularly because at the vast majority of airports, requesting special assistance means you’ll be taken through in a wheelchair—but asking for help is actually giving yourself more autonomy.

Not that requesting the appropriate assistance is always easy. Passengers have accused me of “jumping the line” (wheelchair passengers are usually brought to the front of the line at security and passport control), and cabin crew have refused to help me put my bag into the overhead locker, assuming the reason I can’t lift it is because I overpacked. If it looks like you’re getting special treatment—pre-boarding first on Southwest, for example, means you’ll get first dibs on seats—people can be snide. But grow a thick skin and remind yourself that this so-called special treatment means you’re not compromising your health.

Most importantly, always be open with your needs, which may not be cookie cutter. For years, I would obediently sit in the wheelchair through security, necessitating a painful (for me) pat-down over my trapped nerves. One day I realized I didn’t have to act like a "typical" wheelchair passenger. I could jump out to walk through the body scanner, meaning nobody has to touch me. Likewise, some airlines will try to seat assistance passengers in specific areas, but you don’t have to accept that. Request what’s best for you.

Stay vocal

If you’ve done your pre-travel prep right, you know what you’re entitled to, and you’ll probably know that better than the people dealing with you. That’s why it’s important to be vocal about what you need. In fact, it can be good to be more open about your condition than usual while traveling, especially when hard-pressed airport staff regularly ask people who’ve booked assistance to walk.

Some airports around the world have special "invisible disability" lanyards for travelers, so that even if you’d prefer not to use a wheelchair, you’ll still pre-board and get help where you need it. Ask your local airport if there’s a similar flagging system. At a rental car office, meanwhile, check if there’s a separate line for customers with disabilities. (If there isn’t, do as I did in Reno recently: When people with status kept being served ahead of me, I explained I couldn’t stand for long periods, and I was served right away.) And as a last resort, I sometimes carry a signaling tool. When traveling long haul, I take the cane I used to use full-time, so people are aware there’s an issue. You’re the best judge of your body, so hold firm for what’s been agreed—and what you need.

Remember why you’re doing this

I used to feel guilty about ordering special assistance—I didn’t feel “ill” enough. But then a pain clinic psychologist pointed out that schemes like this aren’t giving us "special" treatment, they’re attempting to put us on a more equal level with the wider world. Requesting assistance at the airport means we can board our flight like everyone else; just because you can’t stand in line, for example, shouldn’t mean you have to board last. Seven years on from that psychologist opening my eyes, I can’t emphasize this enough: you should never feel guilty about requesting something you’re entitled to.