I don't "look" sick

[wintershawl]

Hi all! I am sure this has been discussed over and over again but this is something new to me. I was diagnosed with a brain disease in Aug. of last year and had brain surgery in Dec. This condition causes me lots of fatigue and horrible neck pain if I stand for too long. My plan is to "tough it out" for as long as I can but I am sure at some point I will have to give in and get a wheelchair. The problem is I don't look sick at all, people have told me point blank to my face that I am fine b/c I look so healthy. How do I handle the "looks" in the park that are saying I am taking advantage of something? I don't want my magic ruined b/c I can't tolerate the pain but I also don't want it ruined by others Thanks for any advice you can give me in this matter as I just don't know what to do. I am even thinking about cancelling our trip over this. We were supposed to go this past Oct. but cancelled it because of my diagnosis so to cancel again would tear my kids up.

I spent 3 months of 2007 in the hospital and almost died a couple of times. The next 6 months or so after that I was attempting to recover. As a "reward" for living through all that I did, my husband took me to Disney. I didn't really look sick. The picture by my name is from that trip. However, due to some of the procedures, my legs will never be 100% the same. They are very weak and tire very quickly. I rode in a wheelchair for most of the trip (especially Epcot). I actually did not hear any negative comments from anyone (or not within ear shot). Being only in my early 30's, it is difficult to have to take this mode of transportation at times, but I know the reason why and that is all that matters. For our trip this year, it is most likely that for at least Epcot I will be renting a scooter. It is more pleasant for my DH and I both if I don't tire out after 2 hours.

I would say don't cancel your reservation at all! The staff is very accommodating, and I personally could care less what others say since it truly is not their business anyway.

Go... have fun!!

 

[bidnow5]

I have to agree on vacation = not discussing my issues. I have to deal with it 24/7 365 days a year. I don't have an issue that many other people have and I don't look sick so most people don't understand and many don't believe. I have very few problems with people in Disney that's one of the reasons we keep going back

 

[mommasita]

I am sorry you are going though this. I really know how you feel. I have had a few brain surgeries in the past while myself.
People have offered excellent advice. Do only what you can, no more. Take it one minute at a time, one day at a time.

Nobody knows what anyone is going through, where they have been, etc. I am not a judgemental person, but see so many.

I hope you mend a little more each day

 

[Eeyore5]

I have a question for everyone.... I often want to start a conversation with those in chairs, or seem have have different ablities, but I have had people snap at me for this in the past...

I just have a small obession with all things medical... how can I ask about you and your life without coming off rude? I want to know more about how life effects you I want to know about your surgery, and how you deal with those that DON"T understand, and assume your healthy...

I normally end up being though of as someone giving a 'glare' or a 'rude stare' when really I am looking at you because I want to talk to you and enjoy your company. I grew up with a sister with many medical problems and even at the very end, we were getting people who PARKED US IN at the store, thinking no one in the car could *possibly* be disabled. (despite the handicap card, and popping open the trunk so they could see her very much used and abused manual) so I understand and want to convey that understanding..
am I just doomed to be the one that says nothing, for fear I seem like I am offensive for wanting to know? I know that isn't the only part of you as a person, and I don't mean it that way...

I understand. I am a Special Education Teacher and person with a disability so I am curious about what is going on with other people. But, as a PP said, it really isn't any of my business. And, as someone on the receiving end, it gets very old to have strangers think they have the right to know my medical history. Do you want a stranger coming up to you and asking you about your last pap smear/colonoscopy/or insert other embarrassing and invasive medical exam? Since there is no tone of voice on the internet, know that I am smiling as I write this and am not bothered by the question. Of course since I work out at the senior center pool (I have a medical pass to use the warm pool), I get all kinds of fun questions. It has been my experience that some older folks enjoy swapping their medical stories. I get asked "what's wrong with you? You don't look old enough to be here?" I usually say I aged well. I am in my 3o's so that usually gets a laugh.

 

[Eeyore5]

OP: Go and have fun. Don't worry about what others may or may not say. In a week, I ran into a couple comments using my ECV. Consider that it was 2 people out of the thousands that I saw at Disney, it wasn't a big deal. I did get some people asking where to rent one since they knew that was the only way a loved one could enjoy Disney. And a few people encouraged me to run over the people who they saw cutting in front of me. I declined by saying I wouldn't want to be the cause of someone needing a scooter.

 

[Singledad]

Since there is no tone of voice on the internet, know that I am smiling as I write this and am not bothered by the question

thank you for saying that.

and I am totally like those 'old folks' it was the way I was raised. I grew up in a hospital, due to my sister, and all the kids would ask each other about what was going on with them in the playroom, then move on to other things like what is their fav tv show.

please forgive if my asking offended, I didn't mean it.

 

[dntd]

IDK but I like telling the world about my families condition(s). No MD is not MS and yes girls can get MD, no this form is not normally fatal but it is debilitating and of course the fact this kind is a deletion not a nonsense gene, how ocd make life hard. I love all things medical, always have so september I am starting nursing school. I figure the more you talk to people the more people will become educated. I like to hear peoples stories, though I don't seek them I do enjoy chats. What I hate is people babying my DH , he's a grown man talk to him like he is, I mean to talk to some one with a changed voice is way too much I mean I don't even do that with babies...

 

[Singledad]

IDK but I like telling the world about my families condition(s). No MD is not MS and yes girls can get MD, no this form is not normally fatal but it is debilitating and of course the fact this kind is a deletion not a nonsense gene, how ocd make life hard. I love all things medical, always have so september I am starting nursing school. I figure the more you talk to people the more people will become educated. I like to hear peoples stories, though I don't seek them I do enjoy chats. What I hate is people babying my DH , he's a grown man talk to him like he is, I mean to talk to some one with a changed voice is way too much I mean I don't even do that with babies...

See, that is how I am! only I know I couldn't handle nursing. I get too emotionally attached to people, even if I only know them online, for a moment.

I always talk to all adults like adults, and I talk to all kids like kids. it doesn't matter what abilities they may or may not have. I guess I have a bit of age-ism I need to work on when it comes to not doing the 'kid voice' to kids. habits like that are hard to break.

 

[disneegrl4eva]

I read this often from people who visit wdw and I have to wonder is it just there that you experience this? I'm from CA and have gone to DL so many times and have used an ECV and nobody looks at me like that or shouts out bad things like Ive read from people who go to wdw...in my experiences (and there have been many)people just go about their business and dont get all in an uproar over whether somebody is in a wheelchair or uses an evc

 

[camlgt]

I live the same life of you don't look sick and am on permanent disability. I have sever nerve damage in my right (dominate) arm. It's a long story but for me to even type this its painful. I have been living this saga now for 4 years come April 6th. Let me tell you personally give up caring what others think about your disability. My in laws have had my situation described to them no fewer then 50 times and still don't understand and judge me for it. To make it worse my wife suffers from chronic pain as well and looks 'normal' and they get her issues but not mine. My sister in law is even worse, she has created such a mess because of my issues that we will not even go to Xmas dinner with the family because of her. People don't get it, there is just this preception that if you have a disability you should be in a wheel chair with some abnormality at the least.

Here is something though to let you know you are not alone. Currently there is an estimated 76 million people in this country with chronic pain. Also a lot of these people tough it out and never seek treatment, a lot of them affraid of being judged. With roughly 310 million people in this country, that means 1 in 4 has some kind of chronic pain. So there is a good chance that person judging you doesn't have the courage to seek treatment for thier own pain. So you have already made the first step and realize you need help and to a degree already say you don't care what others think.

IT'S YOUR LIFE, DO WHAT MAKES YOU FEEL THE BEST YOU CAN FEEL, AND FORGET THE OTHERS.

 

[lifeisogood]

We get the special needs pass. My kids do not look disabled (with their autism) but if they had to wait over an hour in a crowded line we would not be able to do Disney. I have never gotten a look from anyone about it and if I did I guess I did not care to notice (lol). I guess if someone were to hassle me I would offer to let the autism leave my child's body and enter theirs and we will gladly wait in a longer line in exchange. Use the pass if needed. We kept seeing this poor guy with his family walking with a cane and having a terrible time and he actually FELL getting off a ride right in front of us! I was disappointed the cast memebers said nothing to him about getting a special pass, I had enough of it and approached him (not wanting to offend) and told him all about the pass and urged him to go get one so he and his kids could have a safer and easier time of it. I do think MOST people are smart enough to know there are disabilities that can not be seen. We took a letter from our doctor our first trip to verify our need but they didn't ask to see it.

 

[seashoreCM]

I --who immediately took me out of PE. I worked in the library instead. I can't tell you how many times other students asked me how I "got out" of PE! And I got the "you don't look sick" reply!e!

Why is it that "getting out of Phys. Ed." is such a privilege? Lots of kids would kill to have more PE and less other subjects!.

Who's in favor of wearing something that calls attention to an injury or illness or disorder, such as a superfluous bandage? Or a tee shirt that names a disability. In this modern day and age it could read something like "Google Rheumatoid Arthritis".

And who has never had a tummyache? You look perfectly fine from the outside (until you vomit). (Hint: In case of tummyache, fast until it is absolutely positively completely gone plus six more hours. Plenty of water is still okay.)

 

[clanmcculloch]

And who has never had a tummyache? You look perfectly fine from the outside (until you vomit). (Hint: In case of tummyache, fast until it is absolutely positively completely gone plus six more hours. Plenty of water is still okay.)

I really hope you're joking about this, right? When going through a GI flare, a tummyache can last a couple of weeks for me, months for some. For the average healthy person this may work but remember that you are on a disability board where lots of people post about food allergies and GI issues. For many on this board, a statement like this is patronizing and irresponsible.

 

[Piper]

I really hope you're joking about this, right? When going through a GI flare, a tummyache can last a couple of weeks for me, months for some. For the average healthy person this may work but remember that you are on a disability board where lots of people post about food allergies and GI issues. For many on this board, a statement like this is patronizing and irresponsible.

Amen! I just dealt with three solid weeks of nausea and dizziness. I think it is finally under control!

(And I was glad it was only 3 weeks this time!)

 

[mickey&minniealways]

Why is it that "getting out of Phys. Ed." is such a privilege? Lots of kids would kill to have more PE and less other subjects!.QUOTE] At our local high school they don't get out of PE get have adaptive PE or as they call it here PE Interactive. The general ed students in this class are there to help those with issues.

 

[Piper]

Why is it that "getting out of Phys. Ed." is such a privilege? Lots of kids would kill to have more PE and less other subjects!.QUOTE] At our local high school they don't get out of PE get have adaptive PE or as they call it here PE Interactive. The general ed students in this class are there to help those with issues.

I am just two weeks shy of 66 years old, so it was a few years ago. There was no adaptive PE and if you' had seen the "gym suits" we had to wear, you wouldn't wonder why the other girls wanted out!!! They were white one piece--the bottoms were like very short bloomers--and it was self-belted around the waist.......and of course, they had to be ironed!!

 

[dntd]

See, that is how I am! only I know I couldn't handle nursing. I get too emotionally attached to people, even if I only know them online, for a moment.

I always talk to all adults like adults, and I talk to all kids like kids. it doesn't matter what abilities they may or may not have. I guess I have a bit of age-ism I need to work on when it comes to not doing the 'kid voice' to kids. habits like that are hard to break.

You learn not to talk to kids in a baby voice and in real words( bottle not baba ect) when you have kids with speech problems as it confuses kids, just leave big words to older kids

 

[Eeyore5]

I am just two weeks shy of 66 years old, so it was a few years ago. There was no adaptive PE and if you' had seen the "gym suits" we had to wear, you wouldn't wonder why the other girls wanted out!!! They were white one piece--the bottoms were like very short bloomers--and it was self-belted around the waist.......and of course, they had to be ironed!!

I think I would have preferred library time to adaptive PE. Although my adaptive PE teacher was great. She was the one who got me into wheelchair sports. She thought it would be hard to convince my parents who worked so hard to get me to walk that a wheelchair was a good thing. Their response was not surprise to me - if it make she happy, go for it. They have always supported me and my dreams.

 

[Eeyore5]

thank you for saying that.

and I am totally like those 'old folks' it was the way I was raised. I grew up in a hospital, due to my sister, and all the kids would ask each other about what was going on with them in the playroom, then move on to other things like what is their fav tv show.

please forgive if my asking offended, I didn't mean it.

I have never been offended by honest questions. It is just that sometimes I want to think about anything but my disability. I prefer honest questions to stares and rude comments. It does help as a PP said if you strike up a conversation first then I might be more willing/interested in talking about myself. But, sometimes I am just not in the mood. As long as a person understand when I say I don't want to discuss it, I am not bothered by questions.