How I Travel With An Invisible Disability

Travel with a disability can be hectic and difficult. Travel with an invisible disability can have a separate set of issues. Travelers with an invisible disability are sometimes met with skepticism over their needs by passengers, staff, and other guests alike. Whether you have chronic pain or MS, an autoimmune disease, cognitive or hearing difficulties, arthritis, or maybe you are post-surgery and unable to lift, travel can be a challenge. I’ve never allowed my invisible disability to prohibit me from traveling, and I hope it never will. However, I have modified how I travel. 

I’ve been dealing with my “invisible disability” symptoms for twenty years. It wasn’t until a few years ago that I was diagnosed with Postural Orthostatic Tachycardia Syndrome (otherwise known as “POTS”). This condition has worsened with age for me. Some people are unfamiliar with it, even medical professionals, but it’s becoming more common and affecting more people. 

POTS is an autonomic nervous system condition caused by an excessive increase in heart rate (tachycardia). Usually, this happens when standing up from a sitting or lying position. POTS occurs due to an abnormal autonomic nervous system response, which regulates involuntary bodily functions like heart rate and blood pressure. Symptoms vary per person. Some of the most common symptoms that I experience when having a “POTS episode” include dizziness, fainting, depth perception difficulties, heat intolerance, extreme fatigue, brain fog, and shortness of breath.

I’ve learned even if a journey doesn’t end in feeling debilitated from symptoms, fainting, or getting sick, it almost always ends in exhaustion.

Flying poses long lines, steps up or down from the aircraft, and long lines and walks to the gate. However, it also gets you to your destination in less time (if there are no delays or cancellations). This means a place to lay down and sleep/rest faster.  If possible, I prefer to drive. If I stand in place for too long, especially while exerting myself in any way (talking, singing, etc.), I risk fainting. Driving gives me the control to stop and rest if needed and control temperatures. Carry any extra items needed, like water, pillows, and other items I need when experiencing a “POTS episode.”

Sometimes, I even car camp. I set up my SUV to have a bed in the back by folding the back seats or removing them. I put in a twin air mattress and made a “mini-hotel” setup while traveling. I’ll also take a fan or portable heater (or a power bank and heated blanket) and a battery-operated or solar lantern. If you are car camping, invest in window coverings when you stop and rest. And locate safe places to pull over (rest stops, travel stations, a 24/7 grocery parking lot, etc.)

I’ve taken short train rides and done well, but I sometimes experience motion sickness. And that can bring on POTS symptoms). I always travel with Dramamine.

I have yet to take a cruise, but I hope to do this soon. I did pass on an opportunity to travel to Antarctica via a cruise. I didn’t think my body could handle traveling through Drake’s Passage. Each person will experience transportation differently based on their body and disability. You are the best judge of your body. 

Travel tip: Consider insurance. Trip cancellation insurance can cover the cost of your trip if you are too sick to travel. When flying, consider selecting a pre-boarding option whenever possible.

I have necessities that I can’t travel without. Make sure you have a list of all the things you absolutely need for your travels and trip. These are a few things to consider:

• Pack medications: Keep all medications in your carry-on bag (if flying) in their original containers.
• Wear compression socks and leggings: These can help manage blood pooling. I prefer to wear compression leggings for athleisure wear, comfort, and the benefits of compression.
• Water and electrolytes: Drink more fluids than normal, and bring electrolyte powders and salty snacks. I take Liquid IV with me.

• Request assistance: Not that requesting the appropriate assistance is always easy. 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 most airports, requesting special assistance means you’ll be taken through in a wheelchair—but asking for help is giving yourself more autonomy. Grow a thick skin and remind yourself that requesting assistance means not compromising your health – I must constantly remind myself of this.
• Use a special lanyard: Some airports worldwide 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.
• Medical Alert Bracelet: Consider getting a medical bracelet with your disabilities or medical needs listed.  Nowadays you can even get stylish ones!
• Consider your seating: Pick seats closer to the boarding entrance or near the aisle, whether flying, taking a bus or train.