My long list of invisable disabilities

[April L Shackleford]

Hello all... So I have IBS- D, narcolepsy with cataplexy ( if something with any element of surprise.. Exciting or scary happens I can potentially lose ALL of my muscle tone for a few minutes and appear unconscious, but I am just temporarily paralyzed for like 5 minutes)... I have anxiety as well and crowds can worsen that for me... I also have ADD but feel that is not my biggest obstacle while at disney (just hopefully we get places on time and i do not lose anything. Lol)... So I could need a bathroom like NOW.... I could fall asleep..even standing up..especially mid day even with my medication. I have a nap idea for MK but need a good AK one as heading back and forth between hotel and park will not be ideal for my family... I could droop over and scare cast members into thinking I have had a seizure or fainted if i have a cataplexy attack ( my family can vouge for me though )... And I could have a panic attack if I feel smothered by people.
I actually am not able to obtain solid employment with my plethora of conditions ( there are more..but hopefully they won't cause problems at disney..chronic ptsd, severe depression, dyslexia, pcos) ...anyway the government identifies me as disabled..I am trying to find a job I can do and even Vocational Rehab deems me as significantly disabled dispite marked improvements in some areas of my mental health. (A good therapist does wonders guys!) I just had my review last month. How it upset me that I am labeled "significantly disabled". Anyway... Looking at me I seem like a typical, hard working Mother. All my issues are neurological, digestive,and/ or mental. I do think I may have a wheat intolerance though and hope to have the IBS under control.
So my questions are... If you had an adult friend or relative with this cocktail of challenges what would you advise them? Wheelchair..yes or no? The DaS pass thing? Do I even qualify? I want help..but no shame. I feel selfish using either one. I can walk, but I have fallen asleep in a pool before..now that was scary! Places to nap? Please do not be rude and say..."not to even go"! This is our dream trip! I can't wait to see the happiness on my kids faces. ❤ Also this trip was gifted to us from someone special who is no longer with us. ..and my hubby is a hard working man. I hate that I feel like I have to explain this all or be judged. I just need some disney lovin friends and support for once. Having invisible disabilities is challenging enough... Thanks. Also I am glad you are here and planning trips of a lifetime! Memories are precious. Thanks.
P.S. Tips for Universal and IoA would be helpful as well. Take care everyone.

 

[gap2368]

I would get a wheelchair for your fainting or what looks like fainting. It might also help with you being so tired. Go to gust relation and talk to them about your needs as it has to do with the lines and why waiting out side might/will be helpful

 

[theluckyrabbit]

First of all, hang in there! I totally hear you. Invisible disabilities are interesting, right? My experience is mainly with DLR, not WDW, but I can still chime in with some Disney advice and suggestions.
1. Don't (and I mean this!) let other people's "judgement" get in your way. If they don't understand what's going on (and most people don't -- it's really just ignorance, not deliberate unkindness), I try to smile at them and move on. Sometimes just calmly explaining that "not all disabilities are visible" is enough. Other times, it just isn't necessary to say anything. Smile and move on. Don't make other people's attitudes your baggage. Like you don't have enough to deal with in a day!
2. Be prepared that your "dream" trip isn't going to look like other people's trips, and that's totally fine! Do what you need to do for your health and peace of mind. Prepare as much as you can, prepare your family as much as you can, then just go with one day at a time. There are days that we ride a few rides, days we ride more than a few, and days we don't ride any rides. And all days at Disney are good. I bring my own snacks with me each day so that I am never at a loss if I need something and there isn't anything nearby that I am able to eat. Disney allows you to bring in your own snacks and water, so protect yourself this way. The peace of mind knowing that I always have at least something with me that I can eat at any time relieves a lot of stress.
3. Disney is wonderful about working with special needs. Whether it is the nurses at First Aid, CMs on rides, Plaids at the Information Kiosks, chefs and servers at restaurants, etc. -- they are very supportive and willing to help. Be as simple and clear as you can be in communicating your needs (remember that CMs aren't medically trained for the most part, so simple and clear really helps). Then let them help you figure out a plan that will work for you. If you need a DAS, by all means apply for one. If your needs are not mobility related (and it sounds like they are not), then you should qualify. Use it if you need it, keep it as an option when you don't need it. Just because you have one doesn't mean you have to use it all the time. And I agree with the pp that a wheelchair might be very handy to have if you suddenly need one.
There is no shame in having special needs, visible or invisible. Disney is for everyone! How your dream trip looks is totally up to you and no one else. Have a magical trip!

 

[Bete]

I would do the wheelchair. I believe you will last longer in the parks that way.

I think it will help if you can go to the parks early. Make your three advanced fastpasses early and then go for additional ones on the fly. I would alternate shows with rides; so, you can have a little rest here and there.

You can use first aid at each park to take a rest, even a nap.

Because the parks are open for a longer day you may find yourself able to go back to your resort for a nap and go back for late evenings if you want to enjoy some fireworks. The parks at night give you a different perspective.

 

[arminnie]

First and foremost you need to stay safe. The temporary paralysis could cause a fall in which you or those around you are injured. A wheelchair would work best to reduce the chance of getting injured even if you don’t need it because you can walk.

For the IBS and the need to go NOW - be aware that it could take some time to extricate yourself from a line and to get to the nearest bathroom. Be prepared that there might be an accident.

Try to be aware at all times where the nearest bathroom is. The Disney app is a good resource. You may even want to wear an adult underwear product. Be aware that a product for urinary incontinence may not work as effectively as one for fecal issues.

Best to carry replacement clothes, plastic bags for soiled items, sanitary wipes etc. hopefully you will not need these. But better to be prepared just in case.

I think you can go and have a wonderful time. Enjoy.

 

[danielocha30]

Do ask for DAS, you will tell them very briefly the symptoms that you might develop while in long crowded lines, and they will be happy to give you one. I doubt they would say no, but if they do... go to other guest relation window.

 

[gap2368]

Do ask for DAS, you will tell them very briefly the symptoms that you might develop while in long crowded lines, and they will be happy to give you one. I doubt they would say no, but if they do... go to other guest relation window.

Make sure you talking about your none mobility problems so things like I can fall and it looks like I fainted would be coincided mobility. I would then get a wheelchair to help keep you safe for the mobility part. The guest relation CM will not look at dr notes but if you find it helpful to write down you needs on paper you can go in and say I have some concerns as it has to waiting in lines and I wrote things down. Do not make it long something like when I have a hard time with being in line becuse _____ and when _____ I need to/or _____ happens (!just to give you an idea. They may ask you some question they may not

 

[Betty Rohrer]

Hello all... So I have IBS- D, narcolepsy with cataplexy ( if something with any element of surprise.. Exciting or scary happens I can potentially lose ALL of my muscle tone for a few minutes and appear unconscious, but I am just temporarily paralyzed for like 5 minutes)... I have anxiety as well and crowds can worsen that for me... I also have ADD but feel that is not my biggest obstacle while at disney (just hopefully we get places on time and i do not lose anything. Lol)... So I could need a bathroom like NOW.... I could fall asleep..even standing up..especially mid day even with my medication. I have a nap idea for MK but need a good AK one as heading back and forth between hotel and park will not be ideal for my family... I could droop over and scare cast members into thinking I have had a seizure or fainted if i have a cataplexy attack ( my family can vouge for me though )... And I could have a panic attack if I feel smothered by people.
I actually am not able to obtain solid employment with my plethora of conditions ( there are more..but hopefully they won't cause problems at disney..chronic ptsd, severe depression, dyslexia, pcos) ...anyway the government identifies me as disabled..I am trying to find a job I can do and even Vocational Rehab deems me as significantly disabled dispite marked improvements in some areas of my mental health. (A good therapist does wonders guys!) I just had my review last month. How it upset me that I am labeled "significantly disabled". Anyway... Looking at me I seem like a typical, hard working Mother. All my issues are neurological, digestive,and/ or mental. I do think I may have a wheat intolerance though and hope to have the IBS under control.
So my questions are... If you had an adult friend or relative with this cocktail of challenges what would you advise them? Wheelchair..yes or no? The DaS pass thing? Do I even qualify? I want help..but no shame. I feel selfish using either one. I can walk, but I have fallen asleep in a pool before..now that was scary! Places to nap? Please do not be rude and say..."not to even go"! This is our dream trip! I can't wait to see the happiness on my kids faces. ❤ Also this trip was gifted to us from someone special who is no longer with us. ..and my hubby is a hard working man. I hate that I feel like I have to explain this all or be judged. I just need some disney lovin friends and support for once. Having invisible disabilities is challenging enough... Thanks. Also I am glad you are here and planning trips of a lifetime! Memories are precious. Thanks.
P.S. Tips for Universal and IoA would be helpful as well. Take care everyone.

one thing that has worked for others that I have known that needed a medical rest was a stop at First Aid you might check that out at AK. if the wheelchair helps you and your family enjoy the parks then go for it. I say it all the time you would tell someone who needs glasses to leave them home because they might fall off while on a ride? there is no difference in using a wheelchair/ECV if you need to use it no matter your age or what others think. we have since lost my adopted daughter but she had a heart attack at 35 and had to use an ECV after that so she and her kids could enjoy Disney. one dumb question what are the ages of kids involved? do you have enough pushers if you need a wheelchair and one or more of them need a stroller?

 

[Simba's Mom]

I really appreciate hearing from you, OP. So often I hear from my family, who should really keep their mouths shut, IMO, "Why is that person on an ECV? They certainly don't look handicapped." I'm so glad you reminded me of options for them. And best wishes to you.

 

[Talking Hands]

Looks can be reviewing. You would never know by looking that my husband only has 20% of his heart function

 

[Hoodie]

I would get a wheelchair and stop by Guest Relations for a DAS. Also, I would really look at all the rides/attractions and try to figure out which may be a problem. Flight of Passage or Soarin' probably would be bad for you, for example. Same with a lot of other "thrill" type rides. If you have thrill seekers, schedule your fast passes for attractions you couldn't do and use the DAS for ones you can. You may be able to do rider swap for some of those as well so you don't have to wait alone.

Watch ride videos so you know what to expect and when to minimize surprises. And have a good trip!

 

[April L Shackleford]

one thing that has worked for others that I have known that needed a medical rest was a stop at First Aid you might check that out at AK. if the wheelchair helps you and your family enjoy the parks then go for it. I say it all the time you would tell someone who needs glasses to leave them home because they might fall off while on a ride? there is no difference in using a wheelchair/ECV if you need to use it no matter your age or what others think. we have since lost my adopted daughter but she had a heart attack at 35 and had to use an ECV after that so she and her kids could enjoy Disney. one dumb question what are the ages of kids involved? do you have enough pushers if you need a wheelchair and one or more of them need a stroller?

Sorry for your loss. I too have lost a daughter...much younger though...my heart goes out to you.

 

[April L Shackleford]

Looks can be reviewing. You would never know by looking that my husband only has 20% of his heart function

Sorry to hear this.

 

[lookame]

Hello
I have Crohn’s disease and anxiety. So I can help with those. As you know with ibs be very aware of where the bathrooms are. Grab a map on the way in or before going to the park and locate each bathroom for everywhere you think you’ll be or plan to be. A lot of people will tell you to make additional stops into the bathroom before getting in line unfortunately both of us know that won’t help at all because it comes on suddenly. I also take an anti diarrheal such as Imodium when I think I won’t be able to use the bathroom or it may be a longer walk to a bathroom. This helps at least slow things a little.

With your anxiety identify when you are beginning to feel overwhelmed and find a quiet area to sit. It may help to put on a guided meditation or it may help to pick up some noise cancelling headphones to put on to drown out the noise. Yry to leave the parks(specifically magic kingdom) earlier than closing as I found once the park closes everyone is being loaded onto transportation. My mom and I stayed back a little ways, found pockets where we weren’t swarmed by people but it can still be difficult during closing.

 

[DisneyOma]

Exciting/scary rides to avoid: Dinosaur, Haunted Mansion (at least the preshow), Tower of Terror, Rockin' Roller Coaster, Star Tours, Expedition Everest, Soarin', Flights of Passage, Kali River Rapids, the mountains at Magic Kingdom.

Most of the attractions at Universal are thrill rides - not sure if there's much there besides the little kids' area (Seuss Landing) that would be safe? I would think it would be very dangerous to pass out on an attraction like a roller coaster or motion-enhanced ride? Plus, the queues are not very accessible - no ECVs allowed in them for the most part. Not sure about wheelchair policy.