Traveling with Agoraphobia: Mental Illness

agoraphobia traveling with a mental illness Amy Dodd Pilkington

Agoraphobia makes it hard for me to leave the house for small things. It causes major issues when planning a vacation. Here’s my recent experience traveling with agoraphobia.

An undiagnosed illness put the brakes on traveling

It has been a few years since I traveled. It wasn’t COVID that stopped our traveling. An undiagnosed illness caused mobility issues that made it hard for me to get out and do anything long before COVID hit. I have finally come to terms with using a wheelchair so I can do more things.

Being an ambulatory wheelchair user still prevents me from doing some things, but it also allows me to do more things because I don’t have to be limited by only being able to walk short distances.

Giving in and getting out of the house with agoraphobia

Once I kicked, screamed, pitched a fit, and declared I wasn’t going, I finally gave in and agreed after some gentle coaching. I have a hard time getting out of my own way. While I know this and I am trying to do better, I’m still a work in progress.

One of the hardest things to do is actually leave the house, but the planning phase and getting ready to leave home are so very stressful that it causes meltdowns. I had several. Ugly ones. It makes it hard for everyone around me, and I wish so much that it wasn’t. Still, it’s a terrible struggle to prepare for leaving and a big deal to actually begin the trip.

Stressing over accessibility while traveling agitates agoraphobia

Since I am an ambulatory wheelchair user, accessibility is very important. If I can’t get there in my wheelchair, I likely can’t do it. Knowing it’s possible that what people list as accessible is technically accessible but not practically accessible means everything is a guessing game. I could get to a destination only to realize that it isn’t accessible to me. That adds to my stress.

Our plan was ambitious and involved a lot of destinations. We planned to do many things, and even though they all claimed to be accessible I knew it was possible something would not be. This made me even more anxious and made it even harder for me to leave home. My thoughts were it was possible I could drive all that way only to have to turn around because I couldn’t do what I wanted to do.

Keeping it together in traffic with anxiety and agoraphobia

Once I left home, I feared I would have multiple panic attacks along the way. I was afraid I would ruin the trip for my husband, and that made it even harder for me to maintain my composure. Everything caused fear and added to my anxiety. This trip was very ambitious, even for someone who doesn’t have anxiety or mobility issues. I mean, we traveled through 11 states in 7 days. It was a lot.

I was pleasantly surprised by how well I did. I mean, I still had a hard time with traffic in some of the bigger cities. Cincinatti, Ohio wasn’t fun. Going into Niagara Falls, New York wasn’t a walk in the park. Richmond, Virginia is awful. Believe it or not, Washington D.C. wasn’t bad at the time we were there.

Mountain roads and going through real mountains

The absolute worst places? Parts of New York south of Letchworth State Park started getting hilly and Pennsylvania and North Carolina were awful. If you think you love the mountains, drive through Pennsylvania and North Carolina. It will cure that right up for you.

Let me make some of you mad. I’ve never been a fan of Gatlinburg and I loathe Pigeon Forge. Gatlinburg isn’t the real mountains. It’s a tourist trap. If you want to see the mountains rather than just shop with a pretty backdrop, get away from Gatlinburg. Drive over into North Carolina and see the real beauty of the mountains without the commercialization. Leave behind Pigeon Forge and all that nonsense. Drive through Cherokee, Maggie Valley, and Nantahala and see nature instead of strip malls and chain restaurants. If you can’t fathom being away from the shops and restaurants, you’re not a fan of mountains – you’re a fan of shopping malls.

Finding ways to unwind and relax while traveling with agoraphobia

Anyway, I’m veering off-topic. Traffic bothered me at times. Going down winding mountain roads with steep grades was unnerving. Being on the road for hours was tiring. But at the end of the day, I was in a hotel room away from everyone else. I had time to unwind and relax, and even though it was in a new place far from home it provided safety from the crowds outside.

My husband was very accommodating in getting takeout rather than eating in restaurants. Being able to avoid crowded restaurants was a big help for me. Being in the car for hours at a time was tiring, but it also gave me time away from busy city streets and crowds. It was nice and quiet. It let me recharge and regroup.

Being spontaneous is a big, big deal

I’ve never been a fan of being spontaneous. I have a strong need to feel like I have some control to combat the feeling of being out of control when I leave home. I plan everything down to the minute when we travel. I planned out half the trip and even veered off track when we passed something interesting – without having a meltdown.

The second half of our trip was a loosely-planned route with no plans for places to go or stay. If we saw a sign that looked interesting, we explored the area. We set the GPS to avoid toll roads and ended up going down backroads in areas so remote that we lost signal. We saw beautiful places that weren’t so developed that they were spoiled by society. We “got lost” in quiet places that we would have never found from the interstate. Unplanned, out of control, and okay with it was an odd feeling for someone who struggles in public. It was nice.

Fast-paced travel is the best travel for me

I think being in the car and hotel rooms and remote locations with fewer people gave me needed space to decompress. It gave me a break from the crowds so I was okay tackling the places where there were crowds. Being exposed to open spaces with lots of people in small doses worked for me.

Being in so many new places in such a short time was terrifying, but I think it is why I managed with few issues. I never had to sit still long. I was in a vehicle or a hotel room away from the crowds much of the time, and I didn’t spend hours on end in the middle of tourist attractions. The fast-paced trip kept me busy but gave me lots of time to regroup. I would do it again. And again. And again. I think this type of trip is great for anyone with agoraphobia because it keeps you from being subjected to big crowds all day, every day while traveling.

Traveling with agoraphobia and mental illness

So, traveling with a mental illness isn’t easy. Traveling with agoraphobia is difficult. Finding a way to travel that is less stressful is amazing. Perhaps now I can see more of the country without having a string of panic attacks and meltdowns.

And maybe this type of trip would work for you. As someone who really struggles with being in public, this was one of the easiest trips I have taken.

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