Hidden Diseases/Disorders

[MissJen]

I'm so glad I found this section.
Just a quick vent hoping someone can commiserate.

My daughter Lily is 10 years old. She is a Make A Wish kid getting her wish this Friday when we go as a family on a Disney cruise for her to swim with dolphins.
She has a hidden disease/disorder.
She has a neurological disorder-- a severe form of epilepsy. It is life threatening and she has a 1 in 10 chance of dying before she reaches 18.

My gripe is this...she looks "completely normal" and people say rude inconsiderate things because they look at her and don't SEE a physical impairment.
Yet if they really knew my daughter, they would see the signs that she is not well. The little things that they don't know are signs she is having a seizure standing right there in front of them. Sometimes hundreds a day.
It is just so frustrating for people to second guess her diagnosis or try to tell us she probably has "something else" or to be condescending at the seriousness of her illness.
We have one of the best neurologists where we live. She has done labs every 3 months or more often for 5 years. It is clearly visible in her MRI, her EEG, her labs... do I need to carry around a medical folder for people to read and understand.

People have said to her "there's nothing wrong with you, you look completely normal."
Seriously? To a 10 year old??
She shouldn't have to tell you her medical history because you can't see her medical condition or because she doesn't have visual symptoms all of the time.

I could go on and on. This ignorance is part of the reason we are homeschooling her this year. It is also what led to her condition worsening, if truth be told.

I just can't believe in this day and age, people (this is a general people...as in the public as a whole) do NOT understand that you can die from something that cannot be seen. And just because you have a full head of hair and can run and play doesn't mean that you aren't deserving of having your wish granted.


Is there anyone out there who gets this? Anyone else who experiences this??

 

[peemagg]

I think you find that a lot of us on here with invisible disabilities (some even visible) totally understand where you are coming from. We all tend to get those questions and comments no matter whether it is a child or adult.

 

[LockShockBarrel]

You'll find lots of people on these boards who get it. A lot of us have invisible issues or kids with invisible issues or someone close to us with invisible issues (I think I covered everyone right?)

I guess the thing that's frustrating is invisible doesn't mean "minor", but it doesn't mean "severe" either. Unfortunately you just can't know what's going on with a person by looking at them. You can't look at someone in a wheelchair and assume the person has an issue with their legs, when it could be a back issue, a hip issue, or even a breathing or stamina issue. You can't look at me and know that I'm a fainter and have blood sugar issues. Obviously that's no where near the severity of your youngster but my point is you could probably look at her and I together and not think there's anything wrong with either of us.

I may get knocked for this part but it's my opinion that a combination of our "me first" society AND those who worked the system to their advantage are at least partly responsible for this being an issue. "You can't have something that I can't" and "Well I can't see anything wrong so you must be faking" crap. And that's what it is, crap.

Now I'm really going to go out on a limb with this next thing and twisting the use slightly, but it still works. I can't remember if it was on Rupaul's Drag Race or Drag U, but Rupaul told someone "What other people think of you is none of your business." The context she used it in was more of a self esteem type thing but I think it works here. Its awful that people have questioned your daughter to your face, but you can't escape narrowminded people no matter what you do, so I think (and again my opinion) you and your daughter could take that quote and kind of run with it. What other people think is their business, therefore it's their issue, let them be mad or jealous or whatever. Don't let their issues be your issues.

 

[WheeledTraveler]

Unfortunately, it doesn't necessarily get better if your disabilities are visible. I tend to get fewer outright "you're not disabled", but a lot more "what's wrong with you?" as a wheelchair user. (Of course, if someone sees me parking before I get my wheelchair out I still really get looks/comments because I'm 20-something and until you see the wheelchair, I look normal and can walk a little with crutches.)

I'd suggest for the general public coming up with some snappy responses. Something along the lines of "I could tell you, but you need to sign a HIPAA waiver first" or "I didn't realize the doctor had had a body replacement and was visiting me in public now". Normally I wouldn't say be rude, but those sort of responses are far less rude than a random stranger questioning disability.

If it's in a situation where you have to disclose your daughter's disability anyway, I'd suggest a "looks can be deceiving" sort of comment.

I'm sorry people are jerks

 

[minkydog]

Rupaul told someone "What other people think of you is none of your business."

Excellent advice! And it's true--you have no control over what other people say or do. But you can take the high road. When someone says something stupid, there's not need for a smart remark. Just pause and say, "Why do you ask?" Don't get defensive. YOU know the truth. Does it really matter if everyone else approves? No.

My DH has invisible disabilities--stage 4 lung disease. He looks fabulous. Even his own family forgets that he is very ill and has a poor prognosis. Just because he doesn't *look* like he has one foot in the grave, doesn't mean that things can't change on a dime. I've seen him go from healthy & pink to circling the drain in less than 12 hours! He has learned to ignore stupid people who question his need for an ECV, wheelchair, or cane. If only they could walk in his shoes for a mile. Oh, wait...he can't walk a mile...

 

[SueM in MN]

Even with a wheelchair, a lot of people assume you are just using it to get some kind of 'perks' that people think wheelchair users get.
We have heard people talking to each other (obviously loud enough for us to hear), saying "I hate it when cheaters like that use a wheelchair just to get ahead".

They figured DD did not need her wheelchair because she was sitting on a bench, with her legs crossed, swinging her top leg. What they didn't see was me lifting her out of the wheelchair, placing her on the Bench. She didn't even cross her own legs.

I agree the problem is the me mentality.

 

[AverageDiser]

Completely understand. DD has a lung disease and we have a handicapped parking placard. At first when she was on O2, it was much easier using it *mentally* because I knew we weren't not going to get any nasty looks, like we would when she wasn't using it, etc. At this point I've gotten rid of the "guilt". Why should I feel bad because of someone else's ignorance? I just don't even give it a thought, because if I do it's giving my attention to someone who clearly doesn't deserve it. When an adult does openly question.. I just give them that Mom-raised eyebrow look and walk or turn away. As we know all too well, life is short, and it's not worth sweating over the petty stuff.

 

[scooby9932]

I am so sorry you are experiencing this. My daughter & I both have hidden disabilities. I firmly believe it is no one's business what they are, how they affect us, or why we use the assistive devices/programs available to us. What I have said to my DD is this: "be a duck." It's our shorthand for letting the nasty comments/looks roll off our back.

You & your loved ones are aware of the issues. Her doctors are aware. That's all that's important. Trying to educate people on your DD's illness will only serve to exhaust, frustrate, and stress you out. So, my advice, is simple - ignore it. I don't say this like it's an easy thing to do. Believe me, it's something I have to work on regularly. But it does get easier with time & with the right attitude.

I would like to add that there are times that my disability is obvious, and yet I still come across people with a strong prejudice against people with disabilities. You wouldn't believe (or you probably would) some of the things I've heard/seen. It's a sad state our society is in when a prejudice like this one is so rampant.

Unfortunately, this is a form of prejudice that is not openly recognized or acknowleged among able-bodied persons. There is a word for it, though. It's called "ableism" and there are many theories as to why it exists.

I'm not sure that ableism is worse now than in the past, necessarily. I think the problem may be that people are more prone to be "in your face" not just about this, but with just about anything. Society seems to be lacking in what I grew up learning as "class" (and this has nothing to do with wealth or status). Whether the cause is ignorance, me-ism, or a result of the "facebook - let's share everything with everyone" mentality, I'm not sure. But I do notice there is a distinct increase in the instances where people will say & do things showing their prejudice than in the past. Maybe they draw courage from what reading people "spew" on the internet behind their anonymous safety net. Whatever the cause, the only thing we can do about it without fail is to control our reactions to it.

If you are interested, there is a website that I like to visit for people with "hidden" ailments. It is butyoudontlooksick.com A very helpful site with many active participants with a variety of ailments.

I hope that you find a way to deal with the issue in a healthy, stress-free way for you and your family. With all that you have to deal with, you certainly don't need any more stress.

On a final note, I just want to wish you & your lovely DD the best of luck & magical experiences on your WISH trip Disney Cruise! I'm sure it will be wonderful.

 

[bopper]

I think this is an example of Cogntive Dissonance.

Wikipedia says:
Cognitive dissonance is a discomfort caused by holding conflicting ideas simultaneously. The theory of cognitive dissonance proposes that people have a motivational drive to reduce dissonance. They do this by changing their attitudes, beliefs, and actions.Dissonance is also reduced by justifying, blaming, and denying.

In this case there is the conflict between "She is in a wheelchair" and "She looks healthy" so they change their belief to "She must be faking."

So you need to choose who needs to know and who doesn't. Sometimes some parents of kids with disabilities do a little presenation about the child's disability/illness to the child's class...this helps cut down on the dissonance.

 

[jdb in AZ]

Along with the Cognitive Dissonance, I think some (not all, fortunately!) super-healthy people are uncomfortable and/or have problems relating to friends with health issues. When I was recovering from a series of major surgeries, people would ask how I was feeling but were obviously uncomfortable if I admitted I was struggling. It was sort of like someone asking, "how ya doin" and expecting to hear the standard "fine" answer. They don't know how to handle/process anything different. So I just learned to say "better than I was," so they didn't have to extend themselves out of their comfort zone.

 

[dclfun]

I will say that there are terribly rude people everywhere and I'm so sad that your dd has had to put up with them at age 10. MAW has rules for who can get a wish and anyone who is on one qualifies. There are alot of wish kids who "look normal". My son was in renal failure when he had his wish and on dialysis, and although he didn't, and still doesn't, have the stamina of others, he looks normal and healthy unless you see the huge bulge in his forearm from needles and enlarged veins. I am also disabled with a very obvious disability and also have stage 4 cancer and a new colostomy -the cancer is already affecting me more than the ALS but no one would know I have it by looking at me as I still have all my hair and there are no noticeable signs. Point being- no one knows what another person may be going through just by looking at them. I hope your dd enjoys her cruise and I doubt ( am hoping!) no one will say anything to her- hopefully they'll all be in vacation mode and not caring what special perks your dd will get. The ship is also great with the wish kids and many of the special things she'll have will not be seen by anyone but your family so as to make it more magical and private for her.

 

[I Love Pluto]

I totally understand!

People are always telling me how good I look. I have even had doctors tell me that I'm the healthiest looking sick person they ever saw.

Because you "look good" - there can be "nothing wrong with you".

I will never be the healthy person I used to be, nor will I ever walk unaided. I will get progressively worse each year. Having people "encourage me" with their words of "oh, you're looking so great lately" an "you'll be up and running in no time" is actually quite annoying. It makes me want to scream.

I choose to approach life with a smile. Obviously, so does your DD.
Keep that sunshine smile - it makes us "look good"!

 

[ALLMama]

We get this all the time. I'm always hearing from people that DS "doesn't look sick" and that "he looks SO good". I like the line that someone posted about "looks can be decieving". People often think that when you have cancer you don't have hair. DS lost his hair for 5 months but it's back now and he still has just under 2 years of chemo left. Most people can't tell, it's true but they don't see that he gets tired so easily. He can run around for a few minutes and then has to sit or lay down. He gets so puffy from meds and he gets such dark circles under his eyes. People only see that he is out and about and goes to school. I've had people ask "isn't he done with that yet". I then go into his whole treatment protocol and I think that kind of shocks them. I guess people don't expect him to be out and about. The worst was when I had a lady tell me in front of him that her grandfather DIED of leukemia once she knew that's what he has. Who does that in front of a 5 year old?? I've found that people surprise you both ways. Some who have experience or know someone that has gone through what you are going through can be so kind and compassionate and some people are just downright clueless.