Life With Lupus

SSD/SSI Update/Rant


Here's a thought, When I was fighting to get my benefits I refused to play the mental health card, People that have lupus are already thought by some to be lazy and crazy, in my fight there was no way I was going to lessen my Illness and its affects by claiming to be depressed as a reason to get benefits, its true it might've been easier and quicker, but I have lupus, severe disabling and life threatening I knew if I fought hard enough I could get it on the merit of my illness alone, and I did. I might have gone broke but I wasn't willing to take it for something that wasn't impacting my life because it's easier. With that being said, it's really sad that even though we have a serious medical condition some of us are left with no choice but to claim mental illness, when we do this doesn't it make it harder for those with lupus to get benefits because of all the mental health claims with lupus as a secondary, its like we are admitting to some degree its all in our heads after all, Lupus is your primary illness, being depressed comes with having to live with this disease, it should never be your primary diagnosis to get benefits, amoung other things it makes you subject to review every few years, at which time they can stop your benefits if they think your depression is getting or should have gotten better, they can request you see thier doctor for review of your mental health, they will not consider the secondary disease at all, which is the real reason for your disability in the first place. I would think it through thoroughly, talk with your lawyer, getting ssd for the wrong reason can have some serious consequences down the road, seeing as even the reviews are making it hard to keep your ssd benefits once you've gotten them. good luck to you


I am going to be applying and I am very worried they will deny it. I have struggled for 15 years and I finally reached a point where I could not work anymore. I did work retail for several years, then I got a desk job. A great job. I just didn't have the strength to continue working. I was approved for short term disability from my job of six years, but that was only for 5 weeks. They went to review my Dr. notes further and they said it was not enough proof to show loss, therefore it was denied. I was so pissed. LOSS!!! I haven't Lost anything! Anyone with this disease knows about loss. I appealed the decision. I made sure to talk about loss when it comes to quality life. I have lost my independce, I have lost my social life..........my daily pain and struggle are my LOSS! I could have kicked that woman in the knee that said that So I am currently awaiting an answer on my appeal. My insurance is hanging in the balance. I am trying to see as many dr.s as I can and fill my scripts as soon as I can. They told me if the appeal is denied then they will send in out for one other review. I have had no income since 5/31. So just about a month now and I have no luck. My mom has given me a name of a lawyer. I am going to call her next week and talk to her about filing for SSI--I think that is the disability. I am very worried about the process though--especially since my short term is making it so hard. have you had any other luck? Did you have a lawyer to start or did you just file online?


My first application was without an attorney, My lupus in the span of 15 years went from bad to worse, when I applied for the 3rd time in 2005 when I was forced to stop working all together, I had a lawyer, 20+ hospitalizations in the last 2 years and letters from 7 specialists stating clearly that I was no longer able to work in any way shape or form, that my quality of life had been diminished to needing around the clock care, and oxygen dependent, I was denied benefits, I won on appeal in 2007, It is very difficult to get ssid with a diagnosis of lupus, our strategy was to concentrate on the complications of having lupus, in my case chronic lung disease, pleurissy, chronic renal failure, heart valve disease, auto immune hepatitis, vasculitis, APS, several TIA's plus a massive stroke in 96, severe and chronic pain and fatigue, oxygen dependency. I would focus more on the complications, that's what worked for me, they need to understand that lupus by itself is one thing, the damage it causes is what makes it so ugly. I've lived with this for over 20 years now I often wonder if I had been awarded benefits even the 2nd time I applied, would the lupus have gotten so bad in the first place, I had to keep working in spite of everything, in 2005 it was over I couldn't have worked if someone had put a gun to my head, my body finally said no more Good luck to you, and keep fighting and take care.