Why are people so inconsiderate to health issues that aren't visible

[Morechocmorechoc]

I've just encountered yet another scenario where someone just can't apply Common sense and it's becoming exhausting. Why is it because someone appears fine they must be.

My son doesn't eat anything. He hasn't gained weight for 1.5yrs nearly and he is 3.5, so anyone who is a parent knows how serious that is. We can't go to most places to eat because his diet is so extremely limited and if we go abroad (extremely rare) we have to cook due to severe allergies and language barriers. Just seems that 'as he looks fine he must be'. As in he happily plays around etc, but it's such hard work spending every waking hour trying to feed him anything at all.

Why can't people understand when you say failure to thrive that some accommodations need to be made. Not eating equals not growing and it's serious. Even family members on a rare day out will do something that means the small bit of food he was eating will stop. People where we are staying now won't check the ingredients on a packet of chicken nuggets (one thing he may eat sometimes) because they are told not to as its a big organisation. Its just tiring. If his issues were something like a wheel chair people would get a ramp out for example because they know what to do, but for something they don't understand nobody will accommodate at all.

Sorry more of a rant, guess I'm jusy wondering what other people's experiences are. I dread to think what happens when he starts school, he won't eat all day.

People pay lip service to hidden disabilities and no more. Before he starts school you need to be in contact with the Head and get whatever medical team is involved to set out a plan. I wouldn't worry too far ahead.

This must be so difficult for you.Does he have a medical diagnosis now and what is being put in place?you say he has allergies how are these controlled.Many people have no experience of eating disorders so make unhelpful comments.Does he have SEN?You need more help.

I understand completely you have my sympathies. My ds was seriously immunocompromised for his first few years and no one quite got no we cannot go to a party!!

You have my sympathy. I think with food issues, people often think it is just intolerances and just parents being awkward. But of course this is not the case and they shouldn’t judge on so little information that they have

It is hard, when away can you take food with you to avoid the allergy issues?

I have to say in general with DS (who has ARFID and is 90% tube fed) I have found when I have explained the issue the vast majority of places are very understanding and will do what they can to help. Anywhere that won’t doesn’t get our business ahain!

I’m really sorry to hear that and hope things get better for all of you.

I have arthritis developing and am always saying how sore I am at work and struggling.

I think genuinely it’s just a pain and inconvenience to others. Unless you’ve lived in the situation most people don’t care unfortunately!

Sorry to hear that HM2020, sounds like he is better now? We have been under 8 consultants at one point, but now guys and St Thomas psychologists and dieticians and a private dietician and a gastro specialist.

Ragruggers, We now understand why this happened (due to something when he was a baby which thankfully passesd now) but nobody can find a good plan to fix it. His official diagnosis is called failure to thrive.

Basically we are on our own. Still seeing people having bloods etc but essentially told nobody can do anything. However Ponoka you are right, shoukd try not to think too far ahead, enough to worry about now! Just the stupidity of the human race is maddening and u find myself becoming less tolerant and more rude to people who are ignorant to it. I guess I would be like it too though if I didn't understand so can't blame them.

Sirzy, we do take food wherever we go. How do you get on with tube feeding? If we can't make rapid improvement that is our next step so I'm very interested to hear about it if you don't mind. How old is your little one?

Thanks Zipkey. Arthritis is horrible I do feel for you. I think work don't generally care about anything more than their minimum legal requirement. Even the lovely bosses wear tired of chronic issues I believe. I hope things improve

It must be unbelievably stressful for you and I sympathise.

But you also have to realise that this just doesn't cross most people's minds -- its not on their radar.

I think you just have to make peace with the fact that you have to spell things out to people very clearly.

Thepeople, I do spell things out and I'm happy to do that. Its once I've done it and they won't help that upsets me. And it's 10x worse when it's close family who have been explained to over and over and still make life harder.

He is 11 now, been tube fed since he was 8. It’s been a life saver for him literally. He was at the point where he was dangerously underweight and still losing more. The tube has taken away all stress around eating, he still doesn’t eat much orally but now it doesn’t matter and we can focus on him eating what he wants when he wants rather than having to worry about the health implications of not eating.

It’s always harder when it’s people close to you that don’t get it, but just remember you know your doing the right thing and being his advocate

Thanks Sirzy. Thats really interesting, how did you manage to make it to 8? I hope you don't mind the questions, I just have no knowledge of this area at all and real life experience is so important so thank you. Does your son mind having the tube and do you think you will be able to progress to a point it isn't needed in the near or distant future?

I have no experience but I am so sorry that you are expereiencing this unhelpfulness.

My view is that we are all terrified under the surface, of death and illness and pain, and many humans are just quite hard to avoid the feelings that come with letting yourself be affected by difficult or worrying things.

If family don't listen or help - dial it down with them a bit. You've got a lot on your plate.

I’m sympathise but honestly, it doesn’t effect them so they don’t care. We simply can’t care about every individual issues in the world or we wouldn’t get anywhere. There are so many conditions that effect so many people, everyone has something in reality. As far as checking ingredients of products, after owning a cafe I know we often put products/ingredients out of their original packaging for storage correctly in fridges/freezers. We tend to know basics like if they are gluten free etc but would keep the vast majority of packages.