How were you treated as a (seriously) sick kid?

In My Humble Opinion
1

I was testing my blood sugar this morning, when suddenly it occurred to me: I’ve probably taken my blood sugar like, a *million *times. So I just did some quick math, and it turns out I’ve taken my blood sugar at least 666,125 times. F**k me! :eek:

Which leads me to my thread topic: Did you or sibling grow up with a life-changing disease, and were you (or that sibling) treated very differently from the rest of the family?

I was diagnosed with type 1 diabetes when I was 10. But no one ever cut me a little slack – I got teased when my blood sugar was low, I was told I was “being dramatic” about things – and no one ever gave me any sympathy. I know, that may sound kind of whiny, but diabetes really is a sucky disease, especially for a kid.

I’m dealing with some mommy issues right now…

http://boards.straightdope.com/sdmb/showthread.php?t=617845

…and I think the way my family treated me because of my diabetes is a big part of the problem. So tell me a little about your medical issue and how that has affected your relationship with them. Were you treated with kid gloves? Did your siblings resent you?

2

OK, no responses but a few views. Maybe I should open this up…

Can we also hear from parents who had to take care of sick kids? Did you resent them at all? Did their disease take a toll on your family as far as finances go?

3

Speaking as a parent of a now adult child with CF and CF related DM (pretty similar to your Type I), I’d just say it was rough watching the kid fail to do the things that were necessary to keep healthy, or slow the decline. This led to a lot of tense situations, unhappiness in general, and strained communication. It affected the whole family, in ways both negative and positive.

It’s hard watching a child make bad choices which have seriously detrimental outcomes in the here and now, and which may not be recoverable from. Plummeting lung function tests and HgbA1Cs in double digits are not happy things.

But ultimately the child is responsible for the disease management (once they’re old enough), and the parents and sibs need to be able to offer encouragement and support while detaching from the process and letting the individual do (or not do) the necessary self-care.

Hope that helps, could say a lot more, but gotta run.

4

Well, I can only speak second hand, but since the thread isn’t exactly whizzing up the page, I’ll babble for a bit and maybe attract some more attention. :wink:

One of my goddaughters (I’ll call her Lindsey, 'cause that’s her name) was a scrawny, whiny, drama queen crybaby as a kid. I felt bad because I didn’t like her, but she was just unbelievably annoying. Her slightly younger sister was an angel in comparison - beautiful, polite, quiet. Of course that made their relationship…complicated. Their father clearly favored the younger, for the same reasons I did, and their mother favored Lindsey, both to defend her against her father, but also because she identified with being the “unliked” kid in the family from her own childhood. You can imagine what kind of dynamic that set up in the family. Not a day without a major meltdown, and all of them pointed back to Lindsey.

Of course, you already know what was up. Lindsey had undiagnosed Type I Diabetes. While she was in the hospital in a coma and we were all suddenly Googling like mad, we discovered the symptoms of high blood sugar. Weight loss, or the inability to gain weight? Check. Irritability? Check. Impulsiveness? Check.

I wish I could say it was like a light went on and Lindsey became a wonderful kid and everyone suddenly got along. Sadly, it was more like a flickering porch light went on, and Lindsey was sometimes aware of her mood and checked her blood sugar, but not always, and everyone’s patterns of behavior were so entrenched that eventually the parents divorced and Lindsey is still seen by many as “a spaz”.

One thing she told me recently (she’s 19 now) gave me a bit of insight into her experience: “Everyone’s always telling me to check my blood sugar! I did, and my blood sugar is FINE! It’s like I don’t have a right to be legitimately pissed off because I have diabetes!” So there’s where awareness backfired. We know that sometimes Lindsey’s behavior is affected by her blood sugar, but we haven’t quite grokked that sometimes it’s not, and that leads to a lot of patronizing dismissal of her concerns.

5

I grew up having terrible allergies, and fewer alternatives to deal with them than there are now.

I was accused of being fussy, a drama queen, rebellious, obstinate, and a bad child for refusing to eat foods I knew would make me seriously ill. I will hasten to add it was not my family who would do this, but children are frequently at the mercy of adults outside the family (school, camp, whatever).

When my skin was covered in rashes strangers would not tell me that would happen if I would just take regular baths, implying I was dirty.

Being refused entry to public pools due to a rash was always fun, too.

When I couldn’t breathe properly in gym class I was accused of being lazy and having a bad attitude. My coughing, wheezing, and staggering around due to lack of sufficient air was attributed to me acting out, not, in fact, what was really wrong - untreated asthma. I was made to feel so bad about being a lazy, nonathletic piece of crap by gym teachers that I was ashamed and never told my parents about these episodes - if I had, my asthma might have been caught much, much earlier in life.

When I went to camp one year I wasn’t allowed to take my allergy medicine regularly - the camp nurse said I “looked too healthy” to need them, even though it had been explained I needed to take them to prevent problems. When I started having a bad reaction I asked for them and was told asking for drugs was bad. When my eyes swelled shut someone finally called the nurse, who then freaked out and called my parents, breathlessly explaining I was to be taken to the hospital. Mom’s reaction? “Obviously you didn’t give her her medication. Why not? If you had, this wouldn’t be happening. Given her 50 mg of Benadryl right now.” Camp nurse refused, because, of course, mom wasn’t a doctor and couldn’t “prescribe” medicine. Camp got cut short for me that year, and I went to a different (and much more accommodating one) the following year.

Long term, the biggest impact has been on my social life. So much social life revolves around food, and there are so many common foods I can’t safely eat. I have often discovered that I have been systematically excluded from events because people fear inviting me - either fearing I’ll have a bad reaction, or they can’t accommodate my needs, or that it would somehow be less rude to simply not invite me at all rather than invite me and simply ignore that I pass over some or all of the food being served.

6

My youngest brother was diagnosed with Type 1 diabetes when he was 13. I am 10 years older than him, so I was already out of the house when this happened. Our middle brother was 19 and at college.

I am kind of horrified that your family would give you a hard time! We had nothing but sympathy for him. Damn right it’s a sucky disease! NO MORE CANDY BARS? Even at 23 that seemed like a death sentence to me.

Was he treated differently? Probably, but it’s hard to sort that out from being the youngest. He was also, without a doubt, just genetically, the nicest one of us. You would have to be a monster to be mean to my brother.

Rather than not cutting him slack, we were always all very concerned…“do you need to eat, are you sure you’re ok, we don’t have to go…”

I think my parents kind of got on his nerves with worrying and hovering, but they were just trying to keep him alive (he really did almost die before he was diagnosed). I think leaving home and going to college was a really difficult transition for my parents, handing off that huge responsibility to him. It didn’t help when one of his freshman roommates died of meningitis :frowning:

Now he’s all grown up with a child of his own and is still the nicest.

7

I have severe scoliosis and started seeing doctors/specialists at about age 11 or so- was braced from ages 12-16, then had a 17 vertebrae fusion at age 20. I had loads of doctor visits, x-rays, traction, body casts and braces in the 4 years that I was treated as a young person and it was literally a non-issue at my house. I wasn’t favored in any way, it was rarely if ever discussed or acknowledged, and I didn’t get any sympathy for it or slack. I was expected to do everything that everyone else did (and I did) and I’m glad it was dealt with that way. If my parents felt sorry for me they didn’t show it at all. I think that their “meh, no big deal” attitude rubbed off on me and I still see it as really not a huge deal despite having daily struggles with pain and mobility issues.

8

I had chronic lung problems. Up until I was 12 or 13 I had pneumonia that hung around for at least a month every winter. Some winters I just couldn’t shake it. I lived a variety of places [army brat] so it was probably not an environmental allergy. Other than getting accustomed to not really having many friends, and not being able to do stuff thanks to being stuck in bed I got turned on to reading. This was starting back in the 60s so the family had 1 tv so it obviously did not get moved into my bedroom :smiley: so my Mom would get me the maximum number of books from the library.

It has carried over into a reading addiction as an adult, I read any time I am not really doing anything else - I would read while I sleep if I could figure out how to keep my eyes open. I will read just about anything, though I am not overfond of sports, westerns, romance and really hate Hemmingway. I also have a high tolerance for being handled medically, I got complimented when I had a barium enema for dx reasons back in the mid 90s, I was cheerful and compliant with the instructions, and we got it over pretty fast. I just don’t see what it helps to be nasty and obstructive when all the techs are trying to do is help get you healthy again. Although I did really want to slap one tech during an ultrasound … grinding that probe over a full bladder is not fun.

9

The only “fuss” my son has received, except of course for some tea and sympathy around the time of his actual spinal fusion surgery, is that it gives him a good excuse to avoid roller coasters…which he’s scared of anyhow. Other than that, and a no-contact sports provision imposed by his doctors, we’ve tried to make it a non issue. He chops wood, he carries stuff, he’s just a normal kid who happens to have a really cool set of scars! (He does like his scars.)

He’s pretty pissed off that he’s *short *as a result of them shaving off the growth plates during his surgery, though. He’s coming to terms with it, but hates the fact that most of the girls his age (18 now) are taller than he is. He’s pretty miffed that I’m an inch taller than he is. It’s really hard as a parent to know what to say to that. I can’t say I’m sorry I made him get the surgery when he was on the path to broken ribs and impaled lungs if we didn’t get it done. He’s made up for it by becoming incredibly strong for his size. If you can’t tower over them, impress them by hauling around really heavy logs for the bonfire, seems to be his strategy!

10

My middle sister (I’m the oldest, and there is a youngest sister) had cancer twice as a teen - at 13 and 16/17. Hodgkin’s disease, to be exact. The second time, she was given a 50/50 chance and had a bone marrow transplant. The donor was my youngest sister, who was 10 or 11 at the time.

Yes, she was treated very differently, of course. She got most of the parental attention, and my youngest sister faired the worst from it all. Mom and Dad essentially didn’t have time to discipline her and we now see the jealousy and bitterness that she holds from it. She got in to drugs, partying and running away, and barely finished high school. She did clean herself up, and is now married and expecting her first child. Her and my middle sister have a LOT of emotional problems with each other. It gets pretty bad sometimes.

My middle sister grew to expect to be treated like a princess and has married a man that tends to cater to her, though she is a very hard worker - she’s an RN and is in her Masters program now. But, she spends a lot on labels (think Coach, etc.), jewelry and expensive trips. She continues to enjoy attention and likes to have people give her what she wants.

I was a teen and young adult when this happened so didn’t feel as neglected. My middle sister and I are best friends, though we did have a few problems when we were teeneagers. I don’t feel like I was affected nearly as much as the youngest was.

11

Tangent : if you’re 60, (I have no idea how old you are), and have had diabetes for 50 years, that works out to 36.5 checks per day. That can’t possibly be right.

Joe

12

:smack:

Yeah, I think the diabetes affected my math brain cells. It’s actually more like 45,625.

13

I grew up with 2 bouts of Rheumatic Fever, bowel obstructions, a burst appendix , multiple ear infections and a mastoid operation. I was sickly but did not have a single disease for my young life. I got pretty tired of going to doctors and waking up in the hospital. Almost all hospital time included recovery during the summer. I missed a lot of baseball.
In school kids acted like whatever had me might rub off. They were nice but standoffish. When I was about 12 ,I was terribly skinny and started weight lifting. Since then I have been healthy as can be.