If your child has a chronic/autoimmune disease, do you tell

amother

Violet

Wed, Jul 12 2017, 8:37 pm

Do u tell others? Family or community members? My child does have a diagnosis and I often wonder if I'm doing the right thing. We made the decision not to tell ppl in the community and not certain family members, bec initially we were told that it would not flare up again after initial treatment which took a year. (Child is aware of diagnosis and was never told not to tell anyone. So no pressure on the child to keep a secret.) So why make a big deal about it and label our child for something that would be history after a year. Well the diagnosis would still be there but it wouldn't require frequent dr visits and tests and medications. Now it looks like it's not going away anytime soon. I still feel conflicted about labeling my child as a sick person. My child attends school regularly and is viewed as healthy. Maybe I want to tell others to see if there is someone else in the community with a similar diagnosis. Maybe I want to tell to get rid of the stigma associated with such diseases. Look my kid may have long term health issues but can function normally. Maybe I just need someone to vent to. But than I get nervous. My friend was sick as achild, and while it's been almost two decades since, she is still having difficulty in shidduchim.

singleagain

Wed, Jul 12 2017, 9:23 pm

if you keep quite you feed the stigma. (if everyone would) speak (about) it, it won't be stigmatized.

are there organizations of finding cures/better treatments? join. see what other parents have to say.

find a support group in your area to get to know others who deal with this. when you aren't alone, it doesn't seem as scary.

amother

Violet

Wed, Jul 12 2017, 9:45 pm

Thank u all for your replies. Thing is, is that it is an incredibly rare disease, and even more uncommon for a child to have it. If my child were to have diabetes of chrons disease, things which are more common I would be more inclined to talk about it. But something so unusual, would cause ppl to talk, or so I think. Perhaps Im wrong.

singleagain

Wed, Jul 12 2017, 9:55 pm

perhaps, since it is so unusual, you should first see if there is a support group in your area. try google (name of disease) support group (zip code) -- there is only so much advice and support we can give when we aren't 100% sure what's going on.

but I have heard that the more you make a big deal out of a thing, the bigger a deal it is... for instance. I have a mental illness, I don't always bring it up, bc I am NOT depressed/anxious, depression/anxiety is something I have. I may bring it up casually. For instance, I go to a support group for people with mood disorders, and if someone asks what I'm doing after work, and it's support group night, I'll say, "I have a support group I go to for people with mood disorders." To just end at "support group," leaves ppl wanting more... but I am also divorced, and I mention that a bit easier than my depression/anxiety... so I might say the group is for ppl in similar situations ... and let them assume it's the divorce... but that's only before I really get to know a person.

My point is, the more casual you are about it, the less of an issue it is. It just becomes another fact of live, like hair and eye color.

amother

Jade

Wed, Jul 12 2017, 10:00 pm

I had an autoimmune disease diagnosed in high school. We weren't secretive about it. Married at 25. 4 kids bh.

DD had cancer at 11. Treated and bh we are in a good place with that. Too hard to keep that quiet.

DH says he wished we could've kept quiet so she wouldn't always be that kid. But really was healthier for her this way.

amother

Hotpink

Wed, Jul 12 2017, 10:07 pm

I have a child with a chronic condition and don't talk about it, he needs monitoring yearly, so far he's young so he doesn't ask questions

Last edited by amother on Wed, Jul 12 2017, 10:08 pm; edited 1 time in total

amother

Forestgreen

Thu, Jul 13 2017, 7:35 am

I have a child with a chronic condition. We are open about it. She can be suddenly hospitalised and having communal support is imperative. At her school the teachers need to know what to do if she had an emergency. That being said, it is not like I post about it on Facebook, so if you don't live near me, or I haven't spoken with you in person for a while you wouldn't know. As I live in a different country to the one I grew up in, there are people I consider good friends who have no idea.

We are more modern so I don't worry about shidduchim.

FranticFrummie

Thu, Jul 13 2017, 10:35 am

The most important question is NOT "what will other people think?"

The question is "What is the best for my child's psychological health." Anything that brings your child and your family support and understanding is a GOOD THING.

Any other consideration is a giant waste of time and energy, and possibly shaming for the child. Kids are not stupid, they know what you're thinking, and they pick up on subtle cues.

I have a chronic illness that impacts my life daily. I'm very open about it, and have found nothing but love and offers of help if needed. I have zero regrets about letting people know.

amother

Hotpink

Thu, Jul 13 2017, 12:25 pm

I think it has to do with how much it impacts the kids life, if it's an issue on day to day basis or just something the kid has that needs monitoring occasionally. I have a chronic condition that needed yearly monitoring n was a huge secret to the point that my parents would brush away all my questions, now that I'm married I have a very difficult time dealing with it. Tho I still prefer that people don't know about it, just wish my parents didn't try to hide it from me...

anonymrs

Thu, Jul 13 2017, 1:04 pm

My child has an extremely rare chronic condition. We are open about it as I believe it's easier for the child this way. People are more understanding and my child won't have to feel like they always have to make excuses for themself since ppl are aware. We don't share many details just bec it isn't necessary but we do let ppl know that something is going on. Feel free to pm me.