Bad lungs

[TheDisneyDoll]

I've never really admitted in but I have a hard time talking for extended amounts of time.

I have Cystic Fibrosis which is a genetic disorder that effects the lungs and digestive system. I have a hard time breathing especially in hot humid environments.
I've been told by people that, that just means i'm too sick to go to places like Disney World, or if i'm that sick I should be at home in bed.


Anyone else out there have similar issues?
Is there anyway to get around it in the parks? I've never really pushed the matter and just suffered through it.
I'm in a position where hopefully I will get better, but i know there are others out there in similar situations who are curious and don't ask.
I think it's good to at least have a place to share stories and vent or just talk it out.


What steps do you take to handle peoples reaction to an "invisible" disease?

 

[JennyDrake]

First of all, it very nice to meet you and thank you for posting.

I have lung issues (extensive scarring from histoplasmosis + asthma--NOTHING as serious as yours) and a better than average awareness of CF and its issues.

You can certainly go to WDW! Early December could be an ideal time due to lower heat, humidity and crowds. An ECV rented from an off site vendor would greatly lessen the exertion factor; I would also recommend staying on site and using WDW transportation. Does this help any????

I've had so much crap in my life that I really don't stress at all about issues--visual (right now a chemo cream is eating my nose and it looks red, raw, scaly and gross) or invisible. I am who I am and I'm OK with you I am--especially the person I am in Christ. I was at WDW in April in a wheelchair w/o anything visible (I was post op from Achilles repair) and honestly, people were understanding. I got no nasty stares or comments.

Let us know how we can help make your Disney dream come true!

 

[clanmcculloch]

If you have endurance problems then consider renting an ECV. That'll allow you to conserve your energy and not tax your lungs.

Choosing one of the cooler months of the year will also be helpful.

If there's any kind of pattern at all to your GI problems then work with them rather than trying to avoid them. What I mean is that if you find that your GI tract is more sedate in the morning then do your park touring in the morning. If eating a certain way helps then do that at WDW. Keeping to your normal at-home schedule makes a big difference on GI tracts as well. If you have urgency problems then wearing some kind of continence pad along with stopped at the restroom between every attraction will help a lot as well.

As to how do I handle people's reactions to hidden disabilities, I just tell them that I just have to take extra steps and do extra planning in order to do the same things everybody else does but that I enjoy all the same things they do even if it's in a different way.

It makes me angry that people would suggest you shouldn't enjoy life because of a disability. That is SO not true. Don't ever let your disability stop you from doing things. When you want to do something, find a way. There are ways (obviously there are some exceptions like I don't know that you'll be able to scuba dive or mountain climb with lung problems but you know what I mean). You just have to take the time to research how.

 

[StitchesGr8Fan]

I agree with the posters who said go in the cooler months when the humidity is lower. If you go in the hot months the humidity permeates everywhere, even closed in buildings with a/c. Stepping in to a shop or restaurant will get you out of the heat, but your lungs will still detect the humidity in the air. And rent an ECV offsite to help you conserve energy.

 

[lanejudy]

Welcome!

I also agree to plan to go during the cooler months. Even then if it's warm, there are ways to help your body stay cooler -- cooling vests, misting fans, clothing/hats to keep the sun off. And stay hydrated -- every QS place will provide a ice water for free if you ask.

For GI problems, like a PP suggested, stick with your regular foods. That may mean using accommodations that offer you a kitchen or kitchenette so you can prepare much of your own food to avoid too many restaurant meals. WDW also allows you to bring in any of your own food, as long as it's not in glass containers or large coolers.

As for ignorant people -- unfortunately they are everywhere. Some may even be family members, who albeit are well-meaning, they simply are not capable of understanding your situation. For the most part, if it's people I have to deal with regularly (such as family or co-workers), simply thank them for their concern or suggestion(s) and assure them you and your doctor know how to handle your condition. Then change the subject.

Only you can truly know your capabilities and limitations. Follow your body -- if it's saying "stop" then listen and take a break. If you think you are up to doing a WDW trip, then I say go for it! Do your research, come back here and ask questions and more questions to help you plan. A positive attitude goes a long way.

 

[Sev]

I too have CF, mine is more GI, my lung function is still around 70%. I find it difficult to stand in lines for long periods and I find it annoying to invest time in line only to have to leave to find a toilet. The old GAC system served me well; the new DAS is a pain to deal with. One Guest Relations member suggested I could leave the line and then return to my previous position. You can only guess how well this would go over with the others in line. My CF has no outward appearance other than I must take things a little slower than others. Disney fails to recognize that all physical disabilities are not the same nor readily apparent. I am hoping Disney returns to a more reasonable approach to dealing with people with disabilities.

 

[JillyBean1899]

I have Cystic Fibrosis which is a genetic disorder that effects the lungs and digestive system. I have a hard time breathing especially in hot humid environments.
I've been told by people that, that just means i'm too sick to go to places like Disney World, or if i'm that sick I should be at home in bed.

What steps do you take to handle peoples reaction to an "invisible" disease?

This website, Invisible Disabilities has a FANTASTIC resource section for dealing with people that say things like "but you don't *LOOK* sick" or "if you were that sick, you'd be home in bed". It doesn't have specific CF information, it's more of a general site for people with various "invisible" disabilities to share information.

On a snarky day, my response is "well, you don't LOOK stupid, so I guess you just never can tell, huh?" Luckily so far that has stayed as an "inside the mind" response and the brain to mouth filter has caught it. But I sure feel like saying it to people sometimes.