I just got approved for SSDI this week, and thought I'd post some details in case it can help anyone.
I applied in Feb 2014, 6 months into being ill, as it was required by my private long term disability policy. I actually never thought I would get to the point of needing it, as I thought I'd be better within a year or two. I'm really glad now that I didn't wait!
I was denied that October, and requested a hearing. The hearing happened in Nov 2016, I wasn't at it, as have moved back to Europe to live with family, so my lawyer went. I got approval this week, feb 1 2017. So entire process took 3 years.
I had the following in my appeal:
-- abnormal tilt test
-- 2 day cpet showing physiological impairment (although I'm glad I had it, it cost me 10% function loss that I've never recovered, so I don't recommend doing this)
-- 2 rounds of cognitive testing a year apart (this was really worthwhile although expensive)
-- lots of doctor visits and write ups
-- normal blood tests and brain scans
There were a lot of things I was worried about while going through this process so I thought I'd write about them here in case they help anyone else.
First, I was worried that I wasn't disabled enough to qualify. The first two years of being sick I wasn't completely housebound. I was able to go out a few times a week on good weeks, and cook for myself most of the time. I had good days where I'd think I was improving. My brain fog and ability to focus would wax and wane, sometimes I would feel normal-ish.
But, doing the CPET made me completely housebound and often bedbound. I can no longer cook for myself and need a lot of help. My brain fog is now unrelenting. It's ridiculous that I made myself so much sicker, in order to prove I was sick. I really thought that I would recover back to baseline from the cpet, but no joy.
I was worried at the point where I had to see their doctors. they proclaimed me "not disabled" and that is used for the first denial. Ultimately the judge wrote up quite a compassionate judgement saying that assessment was not given a lot of weight bc it didn't take my history into account.
I was worried that travel would look bad. I had to leave the US and travel between there and Europe a few times, and I also traveled for some sun while sick in first 2 years. My lawyer was really unhappy with this, thinking they would find out and say I couldn't be sick if I travelled. This was never an issue as they do not look at your passport or ask about travel.
Hope this is helpful to anyone going through the process.