Disability

I'm in the waiting stage of SSDI benefits now. I don't actually have a diagnosis of lupus, it's considered connecting tissue disease right now, but I'm being treated for lupus. I also have a number of coexisting conditions- Narcolepsy type 2, POTS, Digestive enzyme deficiency/malabsorption, Severe Depression, Severe chronic idiopathic constipation.


I don't know what disability will say, but I hope for an approval because I included a ton of information, explanation, and I have a ton of medical records.


I've heard that some get approved within a month and others it takes 3-5 years and hiring a disability lawyer. That's a very wide range.


The hardest part for me was the label of being disabled. The label also made me delay applying for SSDI until I absolutely had to, because to me applying for it is what made the label real about me- "I am disabled"


I struggled all of last year and a handful of months of the previous year after I had to leave my full-time job with acceptance that I would likely not be working full-time again. It wasn't an easy process. I even checked myself into an outpatient behavioral health facility because I was so close to being suicidal enough to start making a plan for how I would kill myself.


I chose ACCEPTANCE as my word to focus on last year. And through it all I have somehow now done almost a full 180 to even being able to embrace it for the freedom it will give me to stay more caught up on things at home and have some sort of social life and hobbies.


Now my main struggle is me learning how to be unaffected by other's perceptions of 'disabled'. I just posted about that in a different discussion topic "invisible disability"

Oh goodness I had a great response typed out and my computer timed out. So I’ll try again.

I can relate to EVERYTHING you said! I had a really hard time leaving my career. I was a nurse and when I had to quit working because of my health I was only 32. So I has only been working 9 years. Everything was really hard at the end. I had changed jobs three times since o got my diagnosis between 2012 and 2016. When I finally left my career I only did it bc a dr I saw at Mayo looked me in the eyes and said, “Amber if you don’t stop working you will work yourself straight into the ground!”

So I left my job in August, and applied for disability in Oct 2016, I got my denial letter in less than 7 days. So I know they couldn’t have even looked at my medical records. So I got a lawyer and we sent my appeal in, in November 2016. It took two years to get a hearing bc at the time MO was short on judges. I had my hearing in the summer of 2018 and finally got my approval in October 2018.

As far as accepting my disability I think that’s something we all struggle with and many different points. I really struggled when I had to quit working bc I had to move back home with my parents bc no money means you can’t pay bills. The other thing I still struggle with to this day, even tho I’ve been diagnosed 12 years this summer , and on disability 5 years in the fall, is dating. I can’t believe that there is any man that would want to take on all of THIS. So I’ve accepted that it may just be me and my Goldendoodle forever.

I’ve also gone thru some very very dark times. My doodle is named Annabelle Grace, yes it’s a human name, I can’t have kids so my dog got my top name. I digress. She got the middle name grace bc she truly was my saving Grace. Had I not gotten her when I did, I wouldn’t be here writing.

I’m so proud of you for taking it all in and making it work for you and not letting it overcome you. I know it doesn’t seem like it but there will come a day when you just don’t care. I used to let the looks I got, and the things people would say to me when I use my handicap placard on my bad days. I learned the hard way that letting the things others say and do impact me only hurts me in the long run. The say it and move on. The best way I was able to finally find acceptance was through therapy. I’ve done a LOT of work. I think everyone should go to therapy at least a few times a year. I’m a huge therapy advocate. So if you haven’t thought about it you might try it. Sorry this is a novel. But I wanted to share a bit about my story and touch on everything.
Big hugs! Amber B, RN (lupus.net team moderator)