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Old 06-18-2013, 05:58 PM   #1
chiefmickeymouse
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Teens with invisible disabilities

After years of trying to discover the root of our son's physical problems, DS16 has been diagnosed with a genetic disorder that effects his connective tissue and heart. He is quite limited physically and has a heart condition that keeps him from being able to do most active things. While it was difficult getting used to the diagnosis (and I admit, a little bit of a relief to at least know what is wrong), I have found a large part of the problem is that he looks like he is perfectly healthy.
He feels like he has to explain himself and his disorder to anybody who asks him if he "plays sports". I can just imagine the dirty looks if we go back to Disney and use a wheel chair! Anyone been there, or there now? I would especially like to hear from young people or parents of young people who have been living with invisible disabilities.
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Old 06-18-2013, 06:28 PM   #2
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I had Lyme Disease as a teen. It affected my autonomic nervous system, so that when I would walk at a face pace my heart would race and I would hyperventilate. People treated me like I was crazy.
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Old 06-18-2013, 06:57 PM   #3
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I know its hard but you can't worry about what other people think. Lots of disabilities are not visible. Just know that you are taking care of your son.
His health is your first priority and keeping him well and not over exhausting him. It is not necessary to tell anyone about his condition.

I always try to put myself in other peoples shoes. We are all human and need to have understanding and sympathy for people who have to have help getting around. Also for people with developmental delays that you can't see or people recovering from cancer or other illnesses.

My daughter is still recovering from a serious concussion. It been three months and its hard to explain to other teens let alone adults what healing from a concussion is like. That it can take from three months to a year for total recovery. All her visible contusions were healed but you can't see a brain injury. So I do know about an injury that you can't see and it can be frustrating. So my heart goes out to you.

As my wise teenage daughters always says "everyone has a story, you don't know what they have gone through in their life, no judging"
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Old 06-18-2013, 07:11 PM   #4
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It isn't just kids who have invisible disabilities. Adults go through the same lack of compassion or understanding. Since I got thyroid/adrenal/endocrine illnesses which cause extreme exhaustion, not simple fatigue like running up a flight of stairs, but needing to sleeping for 12 hours, waking up with still no energy & my muscles feeling pummeled like they ran a 20 mile marathon instead of a flight of stairs, I've had to cut out many activities, cut down my work schedule, put plans & dreams on hold, mourn ones I can never do again, and have been steadily gaining weight.

To tell anyone about it, when I don't look sick, (although I never used to have the hollows under the eyes when I was healthy, or the sallow color to skin, or the saggy, tired skin) since I didn't say I have the "C" word - "Cancer," then I'm just a lazy @**, or someone playing the sick card for attention, or both.

There is a web page on this.
http://www.butyoudontlooksick.com/

Maybe you can find some resources for kids, or find enough info & support to further help your child. They have a FB page:
https://www.facebook.com/bydls
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Old 06-18-2013, 07:11 PM   #5
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I was in high school when I was diagnosed with severe asthma and a heart condition. Throughout college, I was also diagnosed with a GI motility disorder and eosinophilic gastroenteritis. I also had a craniotomy 3 years ago (scar is not visible) that has left me with some lingering problems. I used to feel like I had to explain everything to everyone. I looked perfectly healthy and it was hard to explain why I could no longer do most sports, roller coasters at Disneyland (we live nearby), be on my feet for extended periods of time. The hardest has always been that I can take a turn for the worse very quickly so I can seem fine in the afternoon but be in the ER that night...and ve heard a lot of comments about me faking it because i looked fine that day. It's frustrated and extremely difficult.

Honestly, what helped me get through college was therapy. The last 3 years have been the hardest (3 surgeries, 24 weeks out of school/hospitalized, etc). My therapist has been amazing at helping me deal with my illnesses and the surrounding issues because of it. She is the one who really helped me figure out who does and doesn't deserve an explanation about what is wrong. And she is the one who really helped me figure out how much of an explanation people deserved. A lot of people are just very ignorant and judgmental about invisible medical conditions. They think that if they can't see it, it's either not realtor must not be too serious. I've just learned to shrug it off over the past couple of years.

However, I will never turn down a chance to educate others about invisible illnesses. I've spoken on my former campus multiple times about a few of my illnesses to try and shed some light on how to be less judgmental of others.

It's not easy....and it is still a challenge everyday....and I won't lie...there are days I WISH something about my illnesses was visible. But it's not. And in a way, I like that as well because then people don't know something is wrong unless I tell them which allows me to be more "normal" when I do feel okay.

It takes some time to figure out and adjust but IME, it does get easier over time.
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Old 06-18-2013, 07:38 PM   #6
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I agree with not worrying about what others think but I know that is so hard for teens. We have two tween/teen with invisible disabilities or significant health problems (cardiac and neurological along with other things). We recently went to a comic convention for a weekend and my 12 yr old (who looks perfectly healthy) was in a wheelchair the whole time. He was a bit self conscious but he could not have handled all the standing and walking otherwise. We always have a manual wheelchair in the truck (sometimes two, depending on where we are going and how far we will be walking) because even if they start out having a good day it may not continue. On top of that my husband has an ECV and if he doesn't have his oxygen with him he can look totally healthy even though he's unfortunately anything but. I have wondered what people think when it's a bad health day for everyone and our little group has fewer walkers than those in wheelchairs. It's just the way it is for us though and I'm not going to hide my family away and keep from doing things and making special memories just because a few people may stare or not understand. That same sentiment goes for WDW too. If people think were just faking then fine they can think that. They have no idea what our daily life and it's regimen of treatments an doctors is like. I'm not there to please them. I'm there to make memories and put smiles on my kids faces.
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Old 06-18-2013, 08:14 PM   #7
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Mom of a teenage DD with an invisible disability. It's hard for her, people not understanding why she can't do "normal" things when she looks so normal. She has handled it well, having grown up with her condition (she got sick when she was 13, so her teenage years have been mostly dealing with her disease). Now that she's entering adulthood is when I actually worry the most about her because life doesn't cut you slack because you don't feel well. She has a job and she has never mentioned her condition to anyone and she works hear rear off. She tries very hard to live a life as if she were "normal."

Her college professors don't know (and I doubt they would care) that she stays exhausted and is in near constant pain.

So to the outside world, she's A-OK. But I see the young woman who is exhausted and in so much pain at the end of a day.

I get angry sometimes because it is just so unfair. I work, come home and the worst I have to complain about is eyestrain from looking at a computer screen all day. She collapse and pretty much has no life outside of school and work.

But I'm also proud of her, choosing to push herself harder to try and have the most normal life possible. I do believe that all things are possible, and maybe normal WILL be available to her someday.
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Old 06-18-2013, 08:34 PM   #8
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Quote:
Originally Posted by WDWBarb View Post
Mom of a teenage DD with an invisible disability. It's hard for her, people not understanding why she can't do "normal" things when she looks so normal. She has handled it well, having grown up with her condition (she got sick when she was 13, so her teenage years have been mostly dealing with her disease). Now that she's entering adulthood is when I actually worry the most about her because life doesn't cut you slack because you don't feel well. She has a job and she has never mentioned her condition to anyone and she works hear rear off. She tries very hard to live a life as if she were "normal."

Her college professors don't know (and I doubt they would care) that she stays exhausted and is in near constant pain.

So to the outside world, she's A-OK. But I see the young woman who is exhausted and in so much pain at the end of a day.

I get angry sometimes because it is just so unfair. I work, come home and the worst I have to complain about is eyestrain from looking at a computer screen all day. She collapse and pretty much has no life outside of school and work.

But I'm also proud of her, choosing to push herself harder to try and have the most normal life possible. I do believe that all things are possible, and maybe normal WILL be available to her someday.
This is just another view from a recent college grad for what worked for me...

You never know...her professors might be more understanding than you think. And are there any disability services available at her school? I got accomodations at my university based on my medical conditions and the meds I take. I got medical absences (which meant that if I had a doctors appointment or hospitalization, professors could not dock me participation points, they HAD to let me make up exams, and they could not ask for documentation). I also got to take my exams in the disabilities service center and got extended time on exams because I take Benadryl and/or pain meds on a regular basis.

I firmly believe that if these services are available, they should be used. I would have had to drop out of college without the amazing support of DSC AND my professors. I only had 1 professor over 3 years (9 quarters) who was not so understanding (but he had no choice in the matter...he had to comply). But otherwise, all of my professors were absolutely amazing. And the accomodations did not mean I had it easier than everyone else. It just made it possible for me to do as well as I could. I worked my butt off in school. We have so many pictures of me studying in the hospital or ER all the time. I never stopped working....but I missed 24 weeks of school...no way could I have graduated without some type of help.

And for me, my bosses at my camp and after-care job knew the basics of my situation and my supervisor at my internship knows as well. If anything, it has helped a lot. They have been incredibly understanding because I do work hard when I am there. I take my job and internship very seriously.

Everybody's situation is different but if she is struggling, there is no shame in asking for help if it is available. I was very reluctant at first because I don't like admitting that I am "different" but everyone needs help at sometime and this was what I needed. I am so grateful for the services I was provided the last 3 years.
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Old 06-18-2013, 08:49 PM   #9
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I have MS and noone but maybe my husband knows how sick I really am. I maybe spend an hour with my parents a week at lunch and can hold myself together for an hour. Unless I wake up one day and have a hard time walking then someone would notice, even my kids did but luckily IV meds helps with that for now.

Even though this is regarding Lupus its still the same scenario, that we all go through is that we look healthy. The spoon story, I havent read it in a long time until I read this post but its always in the back of my mind when ppl ask me how im doing and I always say "Im fine".

http://www.butyoudontlooksick.com/na...poonTheory.pdf
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Old 06-18-2013, 08:59 PM   #10
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my dh and both our kids (dd13 and ds11) have invisible disabilities. DH's family carries the gene, so it goes back as far as they know, and many of dh's cousins/aunts/uncles, etc, have it too. It's called Hyperkalemic Periodic Paralysis (it's a form of muscular dystrophy). So it's an invisible disability and a rare disease. Most doctors have to go look it up.

DH was embarrassed when he was growing up, because it wasn't diagnosed yet (for anyone). He would fake limps when he was weak and couldn't walk well. He had to quit sports in early high school because he could no longer keep up (although he was very athletic when feeling well). School was very difficult because sitting too long is a major trigger for them and gives then an 'attack' that leaves them weak. Adrenaline is also a trigger, so when they're nervous, they almost always get an attack.

Our kids tell anyone and everyone about their condition. we've been homeschooling for the past 4 years, but dd tried 8th grade this past year (only last 2 months - it was too much physically), but she's trying 9th grade in september. They're giving her all the accommodations we're asking for... she's able to come in later, have more study halls, etc. Kids will certainly ask why she's coming in late, and she'll happily tell them. I'd rather everyone know, so they don't think the kids are being lazy or faking something, or "why don't they play sports", etc, etc, etc, etc... or when they need help, people will know they really need it. The teachers will know to not call on her, but that she'll participate in class when she feels she can. All of these accommodations are going to help her school success... she couldn't do it without them.

I'd let her professors and everyone else know what she has. They don't have a choice to be understanding if they don't know.

Good luck!
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Old 06-19-2013, 02:40 AM   #11
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Quote:
Originally Posted by chiefmickeymouse View Post
After years of trying to discover the root of our son's physical problems, DS16 has been diagnosed with a genetic disorder that effects his connective tissue and heart. He is quite limited physically and has a heart condition that keeps him from being able to do most active things. While it was difficult getting used to the diagnosis (and I admit, a little bit of a relief to at least know what is wrong), I have found a large part of the problem is that he looks like he is perfectly healthy.
He feels like he has to explain himself and his disorder to anybody who asks him if he "plays sports". I can just imagine the dirty looks if we go back to Disney and use a wheel chair! Anyone been there, or there now? I would especially like to hear from young people or parents of young people who have been living with invisible disabilities.
I have three congenital heart defects, so I am totally with you. I think heart conditions and defects are one of the most ignored health problems in kids and teens (even though 1 in 100 American babies are born with them!) and my heart breaks every time I read a story like yours.

I looked like I was perfectly healthy, right up until freshman year of high school when I went on oxygen full-time. Before the oxygen, I had full restrictions--little exercise, severely limited and ultimately no gym class, no heavy lifting or sports, etc. I had to explain myself on about a weekly basis in gym class as to why I wasn't participating, and there were a few gym substitutes who nearly ended up with "sports injuries" when they tried to force me to do things that I knew my restrictions didn't allow.
After the oxygen went on, I stopped having to explain why I wasn't participating to a few kids in school, and instead had to explain why I was on oxygen to about three quarters of the people I met during that time, adults and kids. Looking back, I'd take the days when my disability was invisible over the days when it was totally visible. During the years I was on oxygen, I used a wheelchair when in places where large amounts of walking (and therefore large amounts of carrying oxygen) were required, such as WDW. And I can tell you I got my fair share of dirty looks when I was in a wheelchair with nothing "apparently" wrong except an oxygen line. I had a hard time in school as well--people who didn't know me before the oxygen didn't really want to be friends with the girl on oxygen, and the ones who did tended to treat me like a charity case or a curiosity. And everyone gossiped about me behind my back, all the time--I'd hear it from kind friends, or occasionally overhear it and get the opportunity to correct someone. I was also sick--a lot, since one of my conditions affects my lungs and makes me easily susceptible to things like bronchitis and pneumonia--and I missed a ton of school. Between those things, I didn't really have many friends in high school.
Shortly before my senior year, I went off oxygen permanently (long story, but basically my condition was too advanced to be helped by oxygen), and while I was back to invisible disability status, I also had to explain where my disability went. The hardest part with that were the people who believed that because my disability was no longer apparent, it no longer existed. Everyone with an invisible disability--whether or not it was visible at some point--will be treated at some point like their disability doesn't really exist. I've had more than a few private conversations about my disability with someone who knew me when I was on oxygen, in which a stranger butted in and kindly informed me that I am clearly not disabled, and that my claiming a disability was offensive to everyone with (cancer, a wheelchair were the most popular). It's one of the hardest parts of having an invisible disability, and even though it sucks it'll continue as long as people aren't aware.
Going off to college helped me, simply because it got me away from the gossipers and the hurtful people who knew me on oxygen. I only stayed in touch with the ones who knew me before, or who at least treated me like a person still after I went on oxygen. So far (I have a year and a half left), I've only used disability services for getting extra absences in class, since I get sick so easily, and even that I stopped using after my first semester. I don't talk about my heart conditions much; it always comes up eventually, but I don't bring it up unless asked. I have had five open heart surgeries, so I have a very visible heart scar that I choose not to hide, so I do get asked about it from time to time, but usually only other heart survivors notice it. When asked, or when prompted by a conversation or class discussion, I do talk quite extensively about my own illnesses (as is obvious from this post!) and my experiences as a teen with an invisible, and also a visible, disability. I raise awareness for heart defects and am very active in my own heart community, but I don't use my defects for attention. In fact, many people, if you asked them, wouldn't know I have any health problems. Only a few of my coworkers know (since I worked at my current job during the oxygen time, a couple knew me then, and it comes up occasionally--some of the funniest moments at work have happened when another coworker happens to overhear a conversation between me and someone who knew me during oxygen about oxygen, and they're just like ). I did start "altering" my own restrictions--I've pretty much figured out what my lifting and exercise tolerances are, and as long as my job (in a Wine and Spirits department of a grocery store/future teacher!!!) allows me to stay within those tolerances I will stay with those jobs.

Overall, I'd say what has got me through my years (19 and counting, almost to 20 years, which is 20 times my original life expectancy, yay!) of heart problems is a combination of not hiding my illness and not talking about it. I know these two seem contradictory, but it's really possible to do both. If I don't have to, I don't mention it. If I don't need an accommodation from a professor, I don't say anything. I don't bring it up in class until it comes up (and it always does, as all my teaching classes so far have discussed helping children with visible and invisible disabilities). But I'm also not afraid to talk about it. I don't hide my scar, under an extra layer of clothing to cover it or under an unwillingness to talk about it. I do have an answer for anyone dumb enough to ask me the question, "So, where'd you get that scar?" (my current favorite is a ninja attack), but I don't respond with sarcasm if the question is phrased politely and preferably within a reasonable context, like "Have you had heart surgery?" or "Do you have a heart problem" since my surgery scar is fairly obviously a surgery scar. I went to heart camp from early middle school until I "graduated" the year I graduated high school, and made a lot of friends within a great heart community there (I highly recommend this, as opposed to a support group). I'm still active within my heart community; I also raise awareness through Facebook all through Heart Month especially and usually afterwards; my cover photo is always an awareness photo. I'm open with family and close friends about my symptoms and the difficulties my condition causes with my life (at least one of my heart friends blogs about her experience, but that's not something I'm quite ready to do yet). I also wear a wristband all the time in memory of two of my heart friends who passed away this last year, and I answer any questions I get about that with usually more information than anyone wanted to know. But if I'm not asked, I don't usually share this information.
Please remember, and remind your son often: you do not have to explain yourself, or your disability, to anyone! I spent so long thinking I had to answer every single question, 100% of the time, and it drove me nuts! I think every single kid out there with any kind of disability needs to know that they are not just their disability, and they don't have to justify themselves to anyone. Personally, I like talking about it, since every person I talk to about heart defects is one more educated person about heart defects. But you don't have to answer the questions if you don't want to! Especially when people are rude about it, or ask judgmental questions (i.e. "You're fit, why aren't you playing a sport, are you just lazy?"). After a while of trying to be patient with people, I finally realized that sometimes I just couldn't answer the thousands of questions about my oxygen, and came up with some basic stock answers (and some basic sarcastic stock answers for the rude people) to get through the conversations. I still have days where I just really don't want to talk about it, and when that's the case I don't. It's enough, in my opinion, that I have to deal with it all the time--I can't explain it all the time, too.

OP, and all the PPs who shared their own stories, I am here for you if you or your son need anything. I understand what it's like to grow up sick, and I wish the very best for you all!
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Old 06-19-2013, 04:31 AM   #12
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As far as people questioning him about sports--can't he just say "not really my things, I am into . . ." and list whatever hobbies he does have?

My teen boy COULD play sports, but that is not his thing and that is how he handles those questions and no one thinks a thing of it.
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Old 06-19-2013, 09:13 AM   #13
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I was diagnosed with Juvenile Rheumatoid Arthritis, Scoliosis, Lordosis, and Neurofibromatosis, Type 1 at the beginning of seventh grade. I only had 2 weeks of PE and then my doctor wouldn't let me take it anymore. I worked in the school library during that period instead. I think it helped that I wan't even in the gym--out of sight, out of mind. Looking back on pictures when I was younger, you can see swollen knees--so who knows when it started!

My mother never cut me any slack--I was told to "suck it up." She was the type of person who always wanted the limelight on her. Many of the doctor's recommendations were ignored and I paid the price both then and later in life.

When my daughter was a year old, I was diagnosed with Lupus. I was 23. I have been dealing with invisible disabilities most of my life. It isn't easy to have people push you to do things you know will make you sick or not believe you when you feel rotten because "You don't look sick."

I am 68 now and have added a few more diagnoses to the mix, but you deal with it. The only good thing is that people cut me a little more slack because of my age! However, my family still doesn't understand because they never heard my parents refer to my challenges, so I'm not sure they quite believe me (and fortunately, I am the only one in my immediate family to inherit the "yucky" genetics!
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Old 06-19-2013, 09:26 AM   #14
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I was diagnosed with Ulcerative Colitis at 14 and had my colon removed at 16. I did Disney that year in a wheelchair with my ostomy bag and had no qualms about it.
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Old 06-19-2013, 11:13 AM   #15
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First, I'm so sorry you're dealing with this. Being a teenager is stress enough without having to deal with health problems on top of that.

Remember, how YOU handle it is going to be a reflection of how HE handles it. If you're not embarrassed or ashamed by the looks, then he won't be. I wouldn't give a crap what other people thought, I KNOW what my child is going through, and none of them have to live with it so stare away!

I always tell my son it doesn't matter what they think unless they pay your rent. Until then... "you know what" them.

My son came down with a bad viral tummy infection at Universal Studios when he was six. We were there with a group of people and we rode him around in a wheelchair. The only stares we got were people concerned about the "cute little boy in the wheelchair". A ride attendant asked me if he could stand for a minute and I said "he could stand for the rest of his life if he felt better!" and everyone laughed. People usually are more concerned than disgusted.

Please just go and have a good time and turn your attention to your son and his feelings only. That way you'll enjoy yourself, too!
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