Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hi everyone,
I thought there was a specific DS group devoted just to disability stuff, but I couldn't find it... sorry if I just overlooked it. I'm cross-posting this to my CFS board and my chronic pain board since I'm not sure where this belongs.
I've had CFS for over a decade, and it's been getting worse and worse, especially the last few years. I've been working part time (about 30 hours) most of the time I've had it, but lately it's been SUCH a struggle to just do that that I started talking with my GP about going on disability. He warned me of what a long, difficult road it is, but said if I wanted to proceed, he would help me fill out forms, etc.
As it happens, I've also been seeing a psychologist to address the emotional problems that stem from a chronic illness, and when I mentioned to her how stressed out I feel every day going to work, she immediately pulled out her SDI disability forms and started filling them out for me, writing me up for six months of coverage.
Does anyone have experience with SDI? I've found it quite confusing; both their site and the people who answer their phone are not especially helpful. If anyone has any answers for me, these are my biggest questions:
Based on your "before disability" income, what percentage of that did SDI provide you? I've read that 55% is common, but I've heard different things from people who've been on it.
Did you go on Medicaid, and what was that like?
Does being on SDI hurt or help my chances of eventually going on long-term disability (which I think is coming, it's just a matter of time).
It seems like you *are* allowed to work reduced on SDI, and they'll cover your lost wages. I will probably have to do this because if they really only pay you 55% of your normal income, that won't be enough to pay my bills, meager as they are. Currently, I work three days a week, as of next week, I will go down to two days. If, later on, I decide two days is still too much, and go down to one (or none) can I adjust my SDI, or if I tell them I'm working two days, is that all they'll cover for the next six months?
Thanks to everyone! This has been confusing and a little scary for me, but I'm hopeful that I'll start getting some help soon :)
Sarah
I thought there was a specific DS group devoted just to disability stuff, but I couldn't find it... sorry if I just overlooked it. I'm cross-posting this to my CFS board and my chronic pain board since I'm not sure where this belongs.
I've had CFS for over a decade, and it's been getting worse and worse, especially the last few years. I've been working part time (about 30 hours) most of the time I've had it, but lately it's been SUCH a struggle to just do that that I started talking with my GP about going on disability. He warned me of what a long, difficult road it is, but said if I wanted to proceed, he would help me fill out forms, etc.
As it happens, I've also been seeing a psychologist to address the emotional problems that stem from a chronic illness, and when I mentioned to her how stressed out I feel every day going to work, she immediately pulled out her SDI disability forms and started filling them out for me, writing me up for six months of coverage.
Does anyone have experience with SDI? I've found it quite confusing; both their site and the people who answer their phone are not especially helpful. If anyone has any answers for me, these are my biggest questions:
Based on your "before disability" income, what percentage of that did SDI provide you? I've read that 55% is common, but I've heard different things from people who've been on it.
Did you go on Medicaid, and what was that like?
Does being on SDI hurt or help my chances of eventually going on long-term disability (which I think is coming, it's just a matter of time).
It seems like you *are* allowed to work reduced on SDI, and they'll cover your lost wages. I will probably have to do this because if they really only pay you 55% of your normal income, that won't be enough to pay my bills, meager as they are. Currently, I work three days a week, as of next week, I will go down to two days. If, later on, I decide two days is still too much, and go down to one (or none) can I adjust my SDI, or if I tell them I'm working two days, is that all they'll cover for the next six months?
Thanks to everyone! This has been confusing and a little scary for me, but I'm hopeful that I'll start getting some help soon :)
Sarah
I don't know about SDI. I DO know that when you can see that you're going to have to leave work soon, THEN is the time to apply for SSD. CFS/ME is a diagnosis that can get you on the system. The whole process is time consuming. So when you're ready to say, I'm gonna be leaving work, that's the time to get a SSD advocate and apply. It usually takes two years. The sooner you apply, the better!
Please don't continue to push your body to the point where one day you wake up and just can't get in the car. If you feel that leaving work is gonna happen, apply for SSD NOW.
You can PM me about who I used and how I got on SSD.