Part of parenting is censoring the world for your child's developing brain.
I see gizmodo I downvote. It's a simple life.
The devil's creation.
No excuse was given. I don't think you comprehended my comment. I literally said I was not talking about the very people you mentioned. I also said their care should not be contingent on the work and that my concern was making sure of that when changes are made.
Let me be clear. I'm talking about you as a person.
Take solace in the fact that it's unlikely the idea of you taking a shit could make you less attractive to them.
I actually found out she had it by watching that show. I was looking at her thinking, "she's got the moon face." Something that happens to us especially when we're forced to take corticosteroids during a bad flair. And then I looked it up and was right. Lady Gaga also has lupus and is obviously still an international superstar. So I think OP will be fine as long as they don't do an extremely rough physical job or work outside.
If they are actually exploiting people... I know this sounds like exploitation but this issue is pretty complex and there may actually be no "jobs" for a lot of differently abled people if there isn't a carve out for certain scenarios. I say jobs in quotes because there are some places that are more or less daycares where adults of certain ability levels can go to work and do end up making less than minimum wage. But they are doing so because they are receiving a level of care and supervision at the same time. These are people who you could not just teach a job and leave to their own devices for any amount of time without endangering them. But they are capable enough to complete certain tasks. I have known adult aged people who's elderly parents would not know what to do if they had to care for them every day all day.
That said, why in our society are some people put in this situation where the only thing they can do with their adult child is send them off to a menial job for daycare? It's great that some people get the option to work, but they should also be able to receive care and not have to work menial jobs for sub minimum wages.
Like I said, the whole thing is way more complex than the no nonsense sound bite. If she were to just waive a regulatory hand and eliminate this exemption, without making more comprehensive changes, it might put some families in a very tough position. Having to suddenly pay for daycare for adults who previously were earning some amount of money.
But the places I'm talking about are usually non-profits employing these people to do work for other for profit businesses. It's not the person at your local movie theater or grocery store working mostly independently and getting paid less than everyone else.
This has all happened before and it will all happen again. This is what it looks like when a social media company tries to head off an incoming regulatory push.
Amazon had never given a shit about their corporate workers. They barely treat them better than the warehouse side. Don't get cancer or they'll put you in performance review. They have a planned turnover rate as well.
This is just them doing layoffs without regulatory oversight or severance.
First things first, treatment is way way better than when your grandmother was diagnosed. We have lots of off label meds and even now have an on label lupus medication. I was diagnosed at just before my 22nd birthday, I'm 38 now and I'm doing great. You can get through this. It gets better.
One thing you are going to have to learn is your new limits. Chances are you've already experienced what it's like to exceed them, but now you know why. Stay out of the sun, take vitamin D, when your body demands rest, listen. Get a consistent sleep schedule and stick to it. If you are not already off alcohol it's worth considering but not necessary (depending on your meds.) Cannabis is also worth considering, but again between you and your doctor(s).
Listen to your doctor(s). Make sure you keep up with your Rheumatologist and your GP. You may have to add in an opthalmologist depending on your meds as well (don't worry about that, eye complications are rare). It may take time to find the medications that work for you, be patient. It's probably not going to be just one medication, most people do best on combinations. Be sure to get off Prednisone as soon as you can tolerate, it's only meant to be temporary and it can have long lasting effects. Find a local support group, the lupus society has them all over. https://www.lupus.org/
Feel free to DM me or add me as a friend. This isn't the end of your life, but it is the start of a big change.
This is all less medical advice than it is lessons I learned the hard way.
ADHD aside interrupting people is rude.