Are there disadvantages getting diagnosed as disabled?
I ask because our young adult son has been chronically ill since high school. He became so ill that he had to leave college.
We don't know if we should encourage him to do this or not.
Thanks for any input.
Posted by Keebler (Member # 12673) on :
- No one is actually diagnosed as disabled. It's the medical / physical reality that results in that happening.
The important thing is honesty. To try to deny what is his reality can be a terrible and crushing criticism of his inability to win over nearly impossible odds.
As hard as it can be to face the reality, it's still what is required for any person's total health, to simply state - without shame or criticism the facts. It's about respect for the person.
If chronic illness causes disability, there is no shame in admitting that. There are likely many "shades" of disability with any illness or condition that results in such, though.
I wonder if what you are asking is if a "disability" explanation may be of help to secure support in one manner or another. Indeed. Especially with college, tutors, accommodations, etc.
How is anyone who needs accommodation going to manage without support? Denying the reality, and the need for support can be denying the very existence of the person burdened with chronic illness. Of course, they need support and it's okay to find programs, etc. that are there for that need.
As for disadvantages, there is no need to write the label on one's forehead and it should not be the leading descriptive for anyone's introduction anywhere.
And, sadly, yes - there are many who would literally crush anyone who says they are disabled but do not appear to be. But those ignorant mean people are not going to be who your son would want in his inner circle, anyway.
But, further, are you asking about social security disability? That's entirely different and very complex.
Is he being treated by a LLMD? You say "chronically ill" but that could encompass many diagnoses. -
Posted by Judie (Member # 38323) on :
If you go for SSDI (social security disability insurance), he can get medicare and a Part D plan. The part D plan pays for prescriptions. If he hasn't paid much into social security, there might be other programs. You might need to look into SSDI.
It can be a long process to get it. It can help financially though if you get approved.
No negative, except people might be puzzled that he has medicare and he's so young (I'm young too). Some doctors will only take medicare if you're over 65.
You need to prove he can't work at all to get it. For me, the exact diagnosis wasn't the issue (I have so many things wrong).
If you want the process to go quickly, I'd hire a disability attorney (they're free and only charge a flat percentage if your case settles).
It took me 5 years to get it. I filled out all the paperwork correctly. I finally hired an attorney and he saw what was missing (something SSDI never even asked me for).
The lawyer took a percentage out of the 5 year wait time. If the case gets resolved fast, the attorney takes less.
If I had it to do over, I'd consult a disability attorneys immediately.
Posted by Keebler (Member # 12673) on :
- Also talk with your area lyme support groups. He / you are not the first ones facing this as patient nor family, I'm sure.
As for certain support opportunities in practical or educational matters, he need not be awarded SSDI in order to quality for accommodations.
If first became very ill in college so I can certainly relate. And, as I know that it may be everything just must be put on hold for now regarding achievements . . . it's still important that his thirst for learning be fed somehow.
He might inquire as to tutors or certain interest groups just being in touch with him, visiting, discussing certain subjects, etc. with zero expectations other than for his connection.
If he can focus on (whatever, however, whenever) then that's great, of course. I find that this must be as individual driven - minute by minute - because of the reality of lyme / TBD. Predicting and planning is very tricky.
My guess is that he will find some sort of projects / interests that will help him with that vital connection / growth and ultimate achievement even if it's just sitting in (or lying down) in a home meeting of the minds with his cohorts and learning one thing a day about something, someone, some place new to him. -
Posted by fushiacat (Member # 13165) on :
I didn't go into our story because it is long, but I will just try to hit the high points.
My son, and our family, has a plethora of problems.
I have been diagnosed with Lyme disease, but did not get diagnosed until I had been sick for 15 years. That was 7 years ago. And after seeing a legion of doctors.
I have been getting treatment since then, but nothing has helped and I have gradually gotten worse. Some of the other things I have developed are lymphedema and Babesia.
My son has been diagnosed with chronic fatigue, XMRV and has almost constant migraines and lots of pain. I believe he also has Lyme, but the "official" test doesn't say so, and right now, we can't afford the other more inclusive tests.
We unknowingly lived in a home with black mold and other molds for seven years. After we discovered that, we moved. We have done treatments for that, too, but tests still show a large mold content in our bodies.
We have emptied our savings, and gone into much debt trying to get well, or at get least some better. But nothing so far.
I am wheelchair bound, and in almost constant pain. I have developed allergies to many things, so that limits what I can take.
At this point, I don't have a lot of confidence that much will help me, but am still hopeful that something can be done for our son. We have been treated by 2 well-known Lyme doctors.
He would love to return to school. He is bright and talented. He originally started out with a full scholarship, but had to give it up because of his failing health.
It is heart-breaking to see all he is missing out on. Currently, he can hardly he can hardly function, and can only stay awake a few hours a day.
I asked about the downside of disability because sometimes having the government involved in your life can be another type of nightmare. I wondered if that were true about this. But we have just about hit the wall financially.
Thanks for the impute.
Posted by Judie (Member # 38323) on :
It might be worth it for him to get medicare, just so he can get tests.
Igenex takes medicare. It's covered it every time I've tested.
He can still go to school if he gets SSDI. That won't limit him from getting an education.