What is the One Thing You Know Now that You Wish You Knew Then?

Artwork: Robin Mead

Survey results from people who were approved for disability.

What is one thing you know now that you wish you had known then?

๐ŸŒธ I wish I had started the process earlier.

๐ŸŒธ Apply as soon as you can, the process takes years

๐ŸŒธ I wish I had known that Social Security standards are not the same as doctors’ standards.

๐ŸŒธ I wish I had known that it isn’t about proving you’re sick; it’s about proving your symptoms make it impossible to work

๐ŸŒธ Go to alternative docs for treatment and mainstream docs for disability paperwork

๐ŸŒธ Don’t listen to people who discourage you. Everyone told me I couldn’t win because I am young, and I have Lyme Disease.

๐ŸŒธ I wish I had known that Lawyer’s do nothing for the first two years.ย  My lawyer didn’t even look at my medical records until about two weeks before my hearing. If I had known, I would have read all my records myself from the beginning.

๐ŸŒธ Appeal hearings take 12-18 months in my state, which is utterly ridiculous and a huge hardship on the truly disabled. So, apply as soon as you can

๐ŸŒธย Make copies of every single thing they send you. My paperwork was lost several and it was stressful having to redo all the forms and get them sent in quickly.

๐ŸŒธ I wish I had known that there were other state benefits I was eligible to receive while I was waiting for the disability decision.

๐ŸŒธ Accept disability and stay on it the first time you receive it! I stupidly returned to work on my own instead of at least filing for the gradual return-to-work program. Then when I inevitably had to reapply, they turned me down.

๐ŸŒธ I wish I had known the resources on this website. I also wish I would had known how isolating it is not working, and how there are places for support. My favorite groups are Fellow Travelers Support and Chat and Chronic Conditions Dream team.

๐ŸŒธ I wish I had known not to hope for approval before the hearing level of appeal.

๐ŸŒธ I wish I knew that if you get cash assistance from the state while you are applying, after you are approved they will take that money back out of your backpay.

๐ŸŒธ I was completely ignorant about how bad my Lyme Literate MD was. I was not able to be proactive and overcome being ill – this I wish had been different.

๐ŸŒธ I think the most helpful person was a wonderful woman at our Center for Independent Living. She told me precisely how to complete my forms. If anyone has such a disability rights center in their area, it might be worth checking out.

๐ŸŒธ One thing I know now that I wish I had known then is: the way Post Exertional Malaise works as that lack of understanding has pushed me from moderate to severe.

๐ŸŒธ I wish I had known not to push and to respect energy boundaries. (Not to try to go back to work)

๐ŸŒธ I could not get a lawyer so I did not appeal. I did not know that I could have appealed on my own without a lawyer. Years later I applied again and was approved.

๐ŸŒธ Social Security tossed my first application in the garbage and lied and said I never filed it. I should have gotten a lawyer, or kept proof that I filed. I had to reapply.

๐ŸŒธ Best advice I got was to overwhelm the judge with paperwork, which I did. He said it was the largest medical record file he had ever received. This helped me win.

๐ŸŒธ I did not know that my disease is on Compassionate Care Allowance List,ย which expedites your case and pretty much guarantees you are approved. (Compassionate Care List is for certain conditions that are very serious or potentially fatal).

๐ŸŒธ I did not know that if you are getting SSI, they donโ€™t give you your backpay right away. It comes in three installments, 6 months apart. There are a lot of special rules for SSI. They donโ€™t tell you any of this, you have to figure it out yourself through trial and error, and the errors can have very serious consequences. Learn more: How to Survive on SSI


Private Disability and LTD is insurance through your employer. It is different than Social Security disability.

๐ŸŒธ I wish I had known that I only get paid 60% of my last W2 instead of 60% of my full-time pay.

๐ŸŒธ Please check your policy. Some policies have limits on mental health but no limits on physical conditions. If this is your situationโ€ฆ. don’t have anything remotely psychiatric in your records – I was told by my LTD case manager that I will not be eligible after 2 years if there is psych component – for this reason I am refusing all suggestions to try the older-generation antidepressants for dysautonomia symptoms.

๐ŸŒธ This sounds so naive now but I really never considered that the LTD policy wouldn’t have to pay out with all my doctors saying the same thing. I was panicked and my life was falling apart and I didn’t research the horror stories around Unum well enough to understand I was playing a game stacked against me and I would need to cross every I and dot every T…repeatedly.

๐ŸŒธ I did the WorkWell Foundation 2-day CPET (I wish I knew how hard the test would be on me)

Learn More

How Did You Get Approved for Disability? (All Survey Results)

3 thoughts on “What is the One Thing You Know Now that You Wish You Knew Then?”

  1. I am so grateful for all the information put together on every page! My mind is so scrambled most of the the time I have a hard to even reading it much less attempting to write something like that.


  2. Exactly…My spouses ex-wife said to me – this person has this and that person has that and THEY WORK. I responded GOOD FOR THEM because they are apparently aren’t as sick as I am! You do know that not all disabilities and diseases are equal, right?! The ignorance astounded me during that phone call!

    Liked by 1 person

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