Angry and tired of hearing other people telling me "it's not that bad"

Thank to all. I know it could be worse, I know it could be better, it's just hard coming from people who have healthy children I guess. Or no children. I've stopped talking to my family and my closest friend about it, those comments usually come from them.
I've had a few nurses too, even at the endo office (yeah, not my favorite nurse).

It was nice to rant.

 

I was feeling out out place reading all the comments. Until this one .. I agree. It COULD be worse. I am also lucky that I do not have any friends or family who have made comments like this. But it is what it is .. And we deal with it. Kaylee will ask once I awhile why SHE has to have D and we tell her because god knew she could handle it .. Because she is so strong etc. I hate it when people give me the pity look and say how awful it must be. I think then I try and Down play that it is hard .. But we live in a very small town .. No one invites kaylee kaylee over .. They are nervous of her d. Kaylee is getting older .. She can start to handle more ... But it it just our new normal ... I guess I feel like with the d some days suck more than others. It is on my mind 24/7 has made life a bit more challenging .. But it could be worse.

 

Exactly!! This is just how I feel ...

 

But see I do not see my child as UN-healthy for the mere fact that she has type 1. She does well in school, is very social and well liked by her peers and adults, she dances, does yoga and will play flag football this year.

There are many other families that also have children with invisible conditions, ones that you might be lumping into your "healthy group". It is possible that the people saying that ""it could be worse"; maybe they DO have a child or have lost a child to a condition and it is their perceptive. Maybe just maybe those that do not have children, do so not by choice and wish that they could have a child like yours.

I know a family that has a child with ADHD and during the school hours he is a well controlled kid and does well but once his meds wear off for the day, OMG I don't know if I could deal with what they do on a nightly basis just to get the simplest tasks done. I know she thinks I have it worse but I think she does, it all depends on personal perspective and what we put out there that allows people to make either sympathetic vs empathetic responses.

 

I just want to say I hear you. Those kind of comments always get to me too because there are so many 'layers' to this disease. It's not like you're just complaining about having a cold or something. People just say really dumb things sometimes.

 

When I returned to work, my boss asked how my son was doing. I replied that he was doing well, though we had a major adjustment to family life. He responded, "Well, at least he isn't dead." I was incensed, couldn't believe what a clod-head he was. Then, someone asked me, "Has he lost a child?" And then, I thought, perhaps he has had worse/greater losses. Perhaps he is a clod-head. But, I ought to consider that he might be speaking from his own losses. I let go of it.

I could write a bunch about how others are reacting or not to his diagnosis, but I just wanted to write to the OP that *I* know what you are going through as do others here. We know it is unfair and hard. We are here. Others, in the outside world are awkward, perhaps uncaring, perhaps have it worse, etc. That doesn't mean your pain isn't real.

Arden's dad said it well:
http://www.huffingtonpost.com/scott-benner/the-air-left-the-room_b_4680751.html

Yesterday, my son and I were watching "Hawking" about Steven Hawking. Son stopped the playback several times, asking questions about the man's paralysis and disease. Finally, son turned to me and said, "You know, I'm really lucky." At this point in the film, Hawking couldn't move, breathe, feed himself, but had his brain intact. What do you mean, I asked? Son expressed that given the choice, he'd take diabetes where he can still live a normal life over ALS, Hawking's disease. "Do you think he is a good role model," he asked? I said I believe he is, as he already has my son thinking that instead of "my life is ruined" that "I am lucky".

 

I learned to pick who I tell diabetes related things to. This forum is great for venting, as everyone understands. The rest of the world cannot understand what a life changing experience it is to include managing a child's diabetes into the daily routine.

 

I feel that any disease that is life threatening is bad. Yeah it can be worse but people have to realize that this disease can be fatal if it's not controlled.

 

Actually, they don't. Most people can get along just fine knowing next to nothing about Type 1 Diabetes, just like most of us did before our children were diagnosed. I'm with Swellman - it could be a lot worse. I don't waste my time talking about DD's Type 1 with friends or family - it is the least interesting thing about her.

 

we as parents need to realize that. No one else does. The last thing I want is for people to believe is that my son will keel over and die at any moment.

 

Whether others understand or not is a much lesser issue to me. My primary concern is to make sure my 7.5 yrs old DD does not start fearing that something horrible has happened to her. We try our best to keep her life as normal as possible.

 

The thing is, your son isn't about to keel over and die at any moment. None of our kids are.

They will lead full lives, with the diabetes becoming ever more manageable over time. I'm not sure I believe they'll find a cure, but certainly the technology will continue to advance giving them ever better tools to do the job.

If they "listen to" their diabetes and avoid cigarettes and overconsumption of alcohol, and exercise and eat reasonably then they will outlive most of their peers.

 

Oh I totally agree. 100%.

What I was trying to convey to the person I quoted was that we as parents need to understand the seriousness of this disease if not controlled, because it is a serious disease, but no on else needs to know that. When you start telling people how serious it is, the danger is that outsiders hear "serious" and believe that my child could die at any moment. And that just isn't true.

We run this risk with school age kids all the time. Parents spent a lot of time saying how deadly diabetes is, in some effort to make people understand, but then they wonder why no other parent wants their child at a sleepover.

 

We told DD's friends it's a serious but manageable condition. And it is.

She has had lots of sleepovers.

 

Hey, good for you.

Your point is?

 

Exactly.

When Type 1 parents drone on about how dangerous it is I just want to scream, "is that really how you want the world to view your kid?" and too, is that really how one wants their kid to view themselves?

 

It's a delicate balance. I don't want his teachers and school caregivers thinking it's no big deal. I saw, first hand, how a principal downplayed a child's very serious peanut allergy. He was all like "He knows what he can eat and can't." This was a discussion about his epi-pen being on a different bus during an unscheduled stop for food. It made me think that these same people who were educated by a nurse views my son's disease completely wrong. When it comes to educating my son's day-to-day caregivers neither I, nor the school nurse, downplays the seriousness. We're not doomsayers but we make sure they know that things can go south fast.

 

I agree. We had problems with a school because they thought it wasn't serious. They believed he could wait a week for the insulin they had left at a campground. To quote the principal "He can go without insulin until next week. He'll be fine." Some people need to know it's serious and can go downhill fast, some don't.

 

No, it's not. It's the truth vs some hyperbolic harping on fatality.

Honestly, I think no one actually reads the bloody comments anymore. If you had you'd realize, as would have Wilf, that Mish and I are talking about parents who imply, infer or outright state that their child could die at any moment, to which I call unnecessary drama.