I don't "look" sick

[martyshoney]

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.

 

[3prettyprincesses]

Oh, you poor thing! I wouldn't cancel your trip, it sounds like you deserve a relaxing vacation (not always easy to do at Disney though, right?). My best advice is to simply ignore ignore ignore. Don't let anyone make you feel badly for your needs. It isn't there business anyway. Just tell yourself that you're here at Disney to enjoy the magic with your kids. If anyone gives you a dirty look, maybe throw something at them. Just kidding! Seriously though, really make a conscious effort to ignore those types of people. Just because someone *looks* normal, doesn't mean they're not dealing with a health issue. Have a fabulous vacation!!

 

[Piper]

I get this quite a bit. As a matter of fact, it started when I was a child.

When I complained of pains in my joints, my mother told me to "suck it up" -- it was just growing pains and everyone had them. After all, other than some redness and swelling, I didn't look sick.

The first week of 7th grade, my PE teacher recognized that I had Juvenile Rheumatoid Arthritis (her sister had it.) The school nurse forced my mother to take me to the doctor--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!

This has continued all my life as I was diagnosed with Neurofibromatosis, type I (with its accompanying scoliosis,) Lupus, and then developed (not surprisingly) Degenerative Disc Disease. I used to be way too thin but as it has gotten more difficult to exercise (and prednisone was prescribed,) I gained weight. Now I not only get the "you don't look sick" - I also get "you're fat and lazy!"

For the most part, I ignore them. I have learned that my job is to take care of me. If using an ECV allows me to experience something I would not otherwise be able to do--so be it. Others do not know me--they don't know what pain or condition I may have. And, usually, those who judge others are trying to make themselves feel better for some deficiency in their own life!

Do what you need to do for you. CheshireFigment has a really good checklist. I am sure he will post it soon. Read it and think about it--it makes sense!

 

[1girln3boys]

I get this quite a bit. As a matter of fact, it started when I was a child.

When I complained of pains in my joints, my mother told me to "suck it up" -- it was just growing pains and everyone had them. After all, other than some redness and swelling, I didn't look sick.

The first week of 7th grade, my PE teacher recognized that I had Juvenile Rheumatoid Arthritis (her sister had it.) The school nurse forced my mother to take me to the doctor--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!

This has continued all my life as I was diagnosed with Neurofibromatosis, type I (with its accompanying scoliosis,) Lupus, and then developed (not surprisingly) Degenerative Disc Disease. I used to be way too thin but as it has gotten more difficult to exercise (and prednisone was prescribed,) I gained weight. Now I not only get the "you don't look sick" - I also get "you're fat and lazy!"

For the most part, I ignore them. I have learned that my job is to take care of me. If using an ECV allows me to experience something I would not otherwise be able to do--so be it. Others do not know me--they don't know what pain or condition I may have. And, usually, those who judge others are trying to make themselves feel better for some deficiency in their own life!

Do what you need to do for you. CheshireFigment has a really good checklist. I am sure he will post it soon. Read it and think about it--it makes sense!

My son was just diaganosed with NF1. I think I've had it my whole life to. I've complained of pain in my legs since I was a child. But my mom always told me it was growing pains. I'm going to be getting tested for NF1 next month.
My legs only hurt me at night when I'm really tired. So luckily it won't be a problem when walking around Disney but it may if we watch any late shows.

 

[irishtigger]

That you are sick and I am even more sorry that you have to deal with this. Please do not cancel your trip. You deserve the magic just like anyone else if not MORE. As for people and their comments I know ignoring is the best option but if you feel the need than say "look if you want my condition than you can take it. Please do so". "I will give you the pain and I will gladly give it to you since you apparently have foot in mouth disease" or something else. I know me and I know my patience level for ignorance so mine would be something else ... I just don't understand why people feel the need to say comments like that. How does it ruin their trip if you get to be in the front of the line really what does it matter. It drives me crazy and is plain ignorant and in my opinion a form of bullying. Also, look into this GAC card that also may come in handy. Call Disney and see what you may need from your doctor to get it. Don't tough it out enjoy your vacation for you and your kids. Do what you need to do to have a good time, take care of you and have an amazing trip. Please!

 

[drewmer]

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.

Take the vacation and ignore the looks. You could get some type of sign that advertises a support group or charity that helps raise awarness of your condition. It might just make someone realize that not all problems are visiable. Have fun and do your thing.

 

[martyshoney]

Thanks so much for the words of encouragement, it makes me feel more comfortable!! I actually did think about getting shirts made for everyday that I am there that say "I survived brain surgery" so people would know why! Why is this world like this that I even feel the need to waste my time on what others think? I wish I wasn't like that!

 

[lilsk8nmac]

@ OP. I wouldnt cancel the trip for the world!

It's no ones business but yours what you do. Seriously, I have many medical conditions (including one that involves my brain). Most of the time I look perfectly healthy, and people think, how can you be sick?

When I was 17 I had to have serious abdominal surgery and for weeks in order to go somewhere- mall, etc my older sister had to push me around in a wheelchair and yes I got stares from people thinking shes young and doesnt LOOK sick. Yes, it bothered me back then, but anymore I'm like heck with it, I'm not going to not have a good time and enjoy my life bc I'm too busy worrying about others and what they think.

So really have fun and do what you have to do to enjoy yourself.

I wish you a wonderful trip in the WORLD!

 

[clanmcculloch]

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 needed to comment about the bolded part. PLEASE, I beg of you, don't do this. If you push yourself until you're worn out then you may end up bed ridden for days. Conserve your energy and use and ECV for the duration of your trip. If you won't do it for you, do it for everybody travelling with you. If you wear yourself out and/or make yourself sick then you're taking away from not only your vacation but theirs as well. Your kids want you to be able to enjoy this trip with them. Riding an ECV will enable you to do this.

We don't use any kind of mobility device (we did one trip because DD10 had a broken ankle but the cast was pretty visible) so I don't have experience with people giving looks over that, but we do use a GAC due to DD13's autism and because she's so high functioning, people who don't deal with autism every day definitely can't see her disability (we get her out of the park quickly if I see signs of a meltdown occuring so people in the parks definitely don't see what we deal with. In all honesty, I've never noticed looks or comments or any other nastiness. Maybe I'm just totally unaware or maybe I'm just too busy enjoying my family but for whatever reason, I've never experienced it. If you go looking for people's stares then you'll likely find them. Just enjoy your family and don't worry about what others may think. You're doing what you have to do for your health and safety and for your family.

Enjoy yourselves and don't think twice about what people you'll never see again may think.

 

[tiggspring]

First I'm so sorry for your diagnosis It is so hard to have these diagnosis that make you feel lazy and not "sick enough" which is crazy what is sick enough? Those of us that are A personalities or are just used to being self sufficient find that invisableness of the disease is worse than the disease itself. which is saying something because we really suffer.

I have had chronic fatigue syndrome and Fibromyalgia for 17yrs now. I know exactly how you feel. I have a hanicap parking pass but rarely use it ecause I hate how I feel when I use it. I only have it because when I go somewere out with my kids like the mall or museum. I know there is a good chance that no matter how much planning I do I will be having trouble walking or get a migraine from fatigue by the time we leave. The truth is the less I have to walk in the parking lot the more I can do with the kids.

To be honest I have never had anyone in all that time give me a look so really it is all about me. Remind yourself that you are doing this for your kids so why is a strangers opinion more important than your kids feelings? If your kid fell down and some stranger said stop being a crybaby you would get angry and tell them that the adult just was ignorant. Cut your self the same slack. My advice at Disney is this. You know you will never see any of these people again so who cares. Use ridemax or other program. I cannot tell you how much ridmax helped me I would not go without it. I did everthing we wanted. Also get a guest assisitance pass. I got one on both our trips. becasue of ridmax I never needed it but I knew that CM had much more latititude to help if I had one as opposed to me being some random guest asking for a favor. Sometimes just ten min of rest immediatly when I need it can prevent hours of pain. Remind yourself that almost no one is paying attention to you THEY ARE AT DISNEY. Anyone that does is paying thousands of dollars to look for the worst in others...seems to me they need my pity because they are more disabled than me
.
Really dealing with invisable disabilities requires a great deal of reframing your thoughts and ignoring ignorant people. To be honest most people on vacation are very self absorbed in doing what they enjoy and wont notice what you do. Of course as in most things in life, this is easier said than done.

HAVE A GREAT TRIP!

 

[lovedisney50]

It is a small minority that will give a second look or say anything. I know it can be hurtful but we just go on with our fun. Don't let a few uninformed people ruin your hard earned vacation. You might look into renting ECV if onsite hotel. It will safe alot of energy.

 

[kahblue]

Nothing wrong with the t-shirt idea! I think you will get quite a few "congrats!" and a lot less complaints BUT don't do it just for the complainers sake. You should be proud to wear that shirt!

My son has Down syndrome and autism. We have little business cards that address his autism and when necessary, we pull them out and give them to people so they understand. You could do that and when someone gives you a hard time, give him a card - they'll feel pretty bad about it, I would hope.

Make sure you have a doctor's note for getting a GAC - Guest Assistance Card. It should be stated what your limits are so that the GAC is filled out appropriately. Enjoy your trip!

 

[tiggspring]

Thanks so much for the words of encouragement, it makes me feel more comfortable!! I actually did think about getting shirts made for everyday that I am there that say "I survived brain surgery" so people would know why! Why is this world like this that I even feel the need to waste my time on what others think? I wish I wasn't like that!

I think that is a great idea! Make up some funny plays on Disney slogins ...what am I celebrating, You just had brain surgery what are you going to do next?? etc.

If this makes you and your family laugh go for it.

Might want to pick up I'm grumpy cause your dopey T at snow white. My DH loves this one.

laughter the best medicine and best way to shut people up

 

[Cheshire Figment]

Please ask yourself the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are traveling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

 

[martyshoney]

Wow, I cannot begin to say Thank You enough for all of your wonderful responses! I got so wrapped up in the idea of what others would think about me that I did not stop to consider my own family's experience and what my stubborness would do to them, how terribly selfish of me. You all are so right in everything you have mentioned! I am so glad I came across this particular forum on the DISboards!!

 

[Taytortots]

I went through the same thing. I've had brain surgery and my illness causes me to have serious fatigue and I can't be long in the heat. I've had many people say the same thing in Disney and I explain to them that I do have an illness.
Ignore those who say things, without the GAC I wouldn't be able to enjoy Disney at all and it sounds like you wouldn't either.
Do not cancel your trip! You need a vacation! don't worry if people say you don't 'look sick' because the truth is that you are.
Have fun in Disney!

 

[Singledad]

if you don't want to go the Tshirt route, you can just pick up a celebration button and write brain surgery on it. I know I had to use my GAC last year (and ps you don't NEED anything at all from your doctor, all you need to do is say what your needs are, like waiting in shade. a lot of CM's wont look at any paper.) I had to use my gac last year and got a look or two but seriously, my friend has a stent to drain her brain fluid, I am allergic to the sun... I don't care how 'healthy' we look, or even the fact we both carry a few extra pounds, it is our trip and if we need that card, we need that card. same goes for the ECV! if I didn't have to push my DD's stroller, I would be getting an EVC for myself. with some of my other medical issues, I know I am going to be exhausted, but can't do EVC and properly care for my daughter. and we will be alone the first few days. so yeah... WISH I could do the EVC to save the headache

 

[bidnow5]

Sorry you are going through this. I would not cancel why ruin what can be a lot of fun for your family.

I have been getting "you don't look sick" for years. I used to tough it out every year when we went to Disney. I held up everyone then I was in agony back at the resort at night. A few years ago I was in so much pain I couldn't walk any more I told my family to go ahead without me.

They all wanted me to rent a scooter but I felt like I didn't need one. Then after sitting for a while I decided to rent a scooter just for the one day. It was the best thing I ever did to make the vacation better for all of us. I rented one every time after that and now my own scooter

 

[mayaflysmama]

We get this "look" everyday. You'd think one would become immune it, but it's still hard. My daughter "looks" totally normal. She uses a wheelchair for pain and fatigue and although for the past several years she's hooked up to IV's 24/7, they are in a backpack and oddly enough no one seems to notice that part, just "hey, she can walk, why's she in a wheelchair" or "isn't she too old to act like that?" (she's 12, but is on a 4 year old level). I had cards printed up (you can get them for free from Vistaprint) and they basically simply explain she has this disease and it affects the way she needs to do things (in her case it also says her brain works different so that's why sometimes she doesn't act like other kids her age). I put a link to a website about her disease on the card too. I don't use them often, but if I get someone really watching or commenting I do and not only does it shut them up quickly I can hope that maybe at least one will read the info and change their perspective on commenting on people with invisible disabilities.

Don't cancel your trip. Go and enjoy.

 

[tiggspring]

Wow, I cannot begin to say Thank You enough for all of your wonderful responses! I got so wrapped up in the idea of what others would think about me that I did not stop to consider my own family's experience and what my stubborness would do to them, how terribly selfish of me. You all are so right in everything you have mentioned! I am so glad I came across this particular forum on the DISboards!!

I know I do this all the time I really miss being the old me..totally understandable!




to all of you who have had mean, ignorant people hurt your feelings!