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Traveling as an able-bodied person can be stressful but it can be even more stressful when you travel with a disability because disabled people have challenges to think about that abled-bodies people would never have to consider. An able-bodied person may find it annoying when they forget something and have to go to the store to go buy it but when you have a disability there are things you can’t forget or you’d have a medical emergency and need to go home immediately. I like visiting family but traveling to get there is one of my least favorite things and there is no way of transportation that you could tell me that I’d like because I hate them all! During the summer months, people often take a lot of vacations and for the most part it can be fun but when you have a disability or chronic pain it can be hard because traveling is not that easy for you and there is always that fear that you will forget something important or have a stoma issue that people don’t understand who will try a little too hard to embarrass you. I am getting ready to go on vacation and in this post I am going to talk about what I do to manage my disability or chronic pain while I’m away.
Call ahead to check the accessibility of the hotel– Accessibility is important for disabled people because it’s hard for us to enjoy ourselves when everything is an obstacle but unfortunately, many able-bodied people don’t see it that way and think accessibility is optional that they can do if they want to. Hotels are required by law to be accessible to some extent but in my experience, the accessibility I see in hotels is not true accessibility and it’s only about as accessible as what the ADA deems as acceptable. Many disabled people cannot travel more than a few hours because hotels do not have the necessary equipment to accommodate disabled people but there isn’t a whole lot we can do about that except maybe write a bad review and hope it changes. Before you book a hotel it is always smart to call ahead and ask about their accessibility because websites will always say they are accessible when they are so far from that to avoid getting a bad review or worse a lawsuit! If a business says they are accessible that doesn’t mean they are because I have gone to hotels where my closet is bigger than the hotel bathroom and although small spaces can work for some disabled people it’s not a workable scenario for most people. Call ahead and ask very specific questions that are yes or no answers that a business can’t lie about because sometimes you have to ask very dumb questions to find out the real accessibility of a business.
Make sure you have plenty of medical supplies- As a disabled person, the one thing that I always have to think that most abled people don’t is if I have enough medical supplies because although I can pick up some things like wipes at the store if I were to forget them most of the supplies I use and need to survive requires a prescription from a doctor and I would need to come home immediately if I forgot them. Before you leave make sure you have all your medication and your backups because it would not be good if you left your preventative at home. If you can pick up a new prescription before you leave it’s always smart to do that because your worst nightmare as a disabled person is forgetting medical supplies that you can’t live without. Never pack just enough medication to get through your trip because you never know if you will have more stoma problems than expected or if your flight is delayed and you are there a few extra days.
If you can bring your old wheelchair- The biggest stress you have as a disabled person when you fly is that your flight will lose an assisitive device and have no desire to replace it. Most assistive devices like wheelchairs cost hundreds or even thousands of dollars with a year waiting period and you can’t just get a new one when a flight is careless because insurance only covers it once every few years. I don’t like to fly or drive long distances but I would rather drive because anything where the pressure changes, messes with my shunt and gives me a weird pain in my neck which causes about a week of non-stop seizures. I don’t fly often but I have before and when I do I take my old wheelchair because it wouldn’t be as bad as if I were to take my newer one that isn’t that old. Personally, I think flights should be required to replace someone’s assistive device in a timely manner because an assistive device is not like losing a laptop and when you lose someone’s crutches you are taking away their freedom. It’s not acceptable to tell disabled people that “oh well I guess you are going to have to buy a new one” because most people can’t afford to just buy a new one and shouldn’t have to when it was not their fault.
Stay hydrated– During the summer months, I am sure that you are well aware that it’s hot everywhere you go, and although places like Florida experience more heat than the northern states there will still be heat in most places that you go which can be bad news when you struggle with chronic pain. Summer is a great time to be hanging out by the pool but I hate going outside in the summer because heat can aggravate pain and make what was supposed to be a fun experience absolutely miserable. I wish I could control the weather because if it were up to me it would never be freezing cold or hot outside and you can wish the temperature were better but can’t control them. Dehydration triggers migraine and chronic pain in general and although you can’t control the heat you can control your water consumption to avoid more pain. If you are outside a lot in the summer and it’s ninety degrees out you should be drinking more water than you would in the wintertime when it’s forty and you probably don’t need to be drinking tons of extra liquid.
Bring your sunglasses– As many of you know I live with chronic migraine and struggle with pain constantly that does not go away when I am on vacation even though you may not see it. I experience light sensitivity often and the way I deal with it when I am traveling is I always have a pair of sunglasses in my purse because you can’t always ask people to turn off all the lights when it’s bothering you even though that would be the easiest scenario.
Have fun-. When you travel as a disabled person it can be more stressful and sometimes when our bodies are not cooperating we focus on the challenges and forget to have fun. It is okay to be frustrated but you shouldn’t let a little struggle ruin your vacation because you can’t control everything and sometimes you just have to deal with problems as they come up without worrying yourself over things that might happen.
Bring all your medical information- I had my very first seizure while I was on vacation that required me to go to a hospital because if it’s your first seizure you should always seek medical attention. Epilepsy is common when you have Hydrocephalus but I had never experienced a seizure until I was eighteen so I hadn’t really thought about the possibility of having a seizure especially when I am in another state. When you go on vacation people aren’t generally thinking about spending the night in a hospital and most of the time you will be well your entire vacation but there is going to be that one time you cut yourself and need stitches. If you traveling a few hours or going to a new state you should always bring your insurance information just in case there is a medical emergency because although you may not use it ninety-nine percent of the time there is going to be that one time you do need to see a doctor but won’t be able to without insurance information.
Try to get yourself on a good eating and sleep schedule- Sleep and nutrition are so important for avoiding migraine attacks because if you don’t eat and sleep well you are more likely to experience pain. If you can try to eat regularly and get yourself on a sleeping schedule that is similar to what you would normally have because sleep deprivation and a poor diet trigger pain. It is okay if you have a few days where you stayed up until three in the morning but I wouldn’t make a regular habit of it because it’s already hard to sleep with pain and you don’t want to get even less sleep than you already get.
Communicate your pain- Chronic pain is invisible and most families try to understand pain, that you cannot see and some people think they do because they know someone who does but you can’t understand something fully that you don’t experience. Bad pain days can happen on vacation and families often will not recognize it because when you have chronic pain you get so good at hiding it. Families are not mind-readers and if you are having a bad day and need less activity you need to communicate that or no one will know. Some people are not going to understand pain and think that you are lying to get out of activity but that is never true because chronic pain takes so much away from you and if anything we want to do more than our bodies allow. Don’t take it personally if someone thinks you are faking because only you know what your body needs and it’s not the job of disabled people to prove it to you.
Don’t wait until the day of to start packing- I am a huge procrastinator and often will put things off until the last possible second and even when I do that sometimes I still can’t motivate myself. Procrastinating before traveling is not like writing a blog post at the last minute and you shouldn’t wait to start your packing until hours before your flight leaves because it will make you more stressed and things will get forgotten. I sometimes will wait to write a blog post until the day I want to publish it which is not always the best idea but I don’t take that approach when I am traveling. When I am traveling a significant distance I always start at least a day in advance to be more organized and less stressed because there is nothing worse than leaving medication sitting on my countertop that you would have to turn around and go get it or be weeks without it which is not always an option for disabled people.
Traveling with a disability or chronic pain is not an option for everyone and it can be fun for those that can travel but also a little stressful. Disabled and chronically ill people often get tired quicker than abled-bodied because pain is exhausting. I think I will always hate traveling because of my chronic pain and disability in general but if my challenges were to also take a vacation I may not hate it as much. I promise you that my body knows when I am not home and everything that could go wrong with my stoma does and if it doesn’t it probably will eventually. If you are going on vacation it’s okay to be frustrated when pain flares but you shouldn’t let a little bit of struggle make you angry and bitter because your disability is something you live with but it’s not who you are. If you are going on vacation I hope you found these tips useful and are less stressed on your next vacation. How do you make traveling with a disability or chronic pain easier and less stressful?
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Thanks for understanding!