By: Erin Migdol
If your illness or disability is at a point where it’s affecting your ability to work and earn money, you may consider filing for Social Security disability benefits. If you’re approved for Social Security Disability Insurance (SSDI), you’d begin receiving payments the sixth month after your disability was determined to begin, in an amount based on your lifetime average earnings covered by Social Security. You can also apply for Supplemental Security Income (SSI), which is based on need and doesn’t require you to have worked before.
Applying for disability has the reputation of being a frustrating, confusing process — especially since an estimated 60 to 70 percent of applicants are denied the first time, setting off an often-lengthy appeal process. People with invisible illnesses may encounter unique challenges, since disability reviewers may not understand how limiting their medical condition actually is.
Talking with others who have been through the disability process can help give you “insider tips” you wouldn’t have known before. So we asked our Mighty community to share what they wish they knew about applying for disability benefits before they started the process. It’s important to remember that everyone’s medical situation is unique, and the disability process is different for each person. But hopefully these tips can give you an idea of strategies to consider.
Here’s what our community told us:
1. “I still haven’t been approved. But I wish I knew to check up on your doctors. Make sure they are making notes of what your appointment is about. Sometimes they don’t, and the appointment is a waste on paper. Your diagnosis needs to be documented. You would be surprised how many doctors fail to do this.” — Jillian C.
2. “I wish I would have been prepared for all the feelings. You have to almost strip yourself bare and prove you’re truly unable to work to many strangers. Plus the roller-coaster feelings of relief, quickly followed by grief. Grief for the person you were, and grief for the person you could have been in the future.” — Ashley C.
3. “[I wish I’d known] to start out with a lawyer instead of waiting until after I’d been denied. I’ve got a very good case according to my lawyer, and I could have saved nine months.” — Allison W.
4. “I was lucky to have found an advocate in my small rare disease group. He gave me many tips, but one of the best ones was to overload the review team with paperwork… Daily pain and routine journals, letters from doctors, what he called ‘A Day in The Life,’ fact sheets about my rare disorder along with how each symptom affects me and my ability to work… A page-long summary of a typical day for me. Details, details, details!” — Michelle M.
5. “Get your doctors, especially specialists, to write letters on your behalf explaining why you are disabled and what medically disables you! My nephrologist and primary both wrote letters urging the judge to take consideration to all aspects of my health issues, and I feel that was helpful.” — Kathryn W.
6. “I wish I would have known to ignore everyone who says you won’t get approved the first time or that you need a lawyer! I was so afraid to apply after the horror stories I had heard and advisors telling me I wouldn’t even qualify. I put it off for so long. And you know what? I got approved in less than three months, my first try, no hassle, no lawyer. A lot of people have a difficult time and get screwed over, but it isn’t everyone as people lead you to believe.” — Alison S.
7. “You [may] have to prove again that you’re still disabled. You’ll have to complete paperwork, get medical records, etc, etc. and it’s possible for them to deny your benefits because they believe you’re no longer disabled. It is a terrifying feeling that the benefits you fought so hard for for over three years to get and depend on could get yanked away. So continue to document everything. Every doctor appointment, keep logs, everything. Being sick is your full-time job.” — Jolene M.
8. “I wish I knew how hard it would be to convince a group of strangers that I might not look ‘sick’ but in reality I’m constantly hurting.” — Sammi F.
9. “Ask for anything Social Security tells you in writing. Just because a helpful clerk says one thing doesn’t mean someone else will back it up unless it’s in writing.” — Colleen S.
10. “Follow through with paperwork thoroughly, and be as detailed as possible. Never hide your pain, write it down as many times as possible. Get letters from your doctors approving you for disability. This helps tremendously! I was surprised I was approved on my first try and within six months. As soon as I received paperwork from them, even if I wasn’t well, I’d make sure to fill it out and mail back immediately. My case worker told me this is why I was approved so quick, plus because of my disability.” — Vanesa B.
11. “If you’re going to do it yourself, you’re better off requesting your medical records yourself and making sure everything is there before you send in your application. Have letters of support from your doctors that include your diagnosis.” — Brittany H.
12. “When you have an invisible chronic illness, especially one that is rare, you have to be prepared mentally for people to say you are lying, it’s all in your head, or you will be better soon even though there is no cure. The disability process for people that are truly sick is a test of endurance, frustration and letdowns. This is very unfair when you don’t have much physically or emotionally to give. It’s not easy to ask for help from anyone let alone from disability because that means there is no other option. Mentally prepare yourself for that.” — Da F.
13. “I wish I knew how many people I would be dealing with. I struggled to keep them all straight.” — Kelly M.
14. “I wish I knew how long it actually takes. Most people are denied the first time. If you are denied, do the appeal immediately or your initial date can change and have to start from the beginning.” — Crystal W.
15. “The most important thing is to prove inability to work. That’s all they really care about. How long can you stand, sit, walk, can you lift, carry. What mental and cognitive abilities have been affected. And any documents showing this. This is not the time to be a hero. Do not downplay your symptoms. Tell the truth, because if you don’t it will come out. But tell the truth about how bad your condition is. Physical limitations that are factual and easy to show are the best. Daily pain journals are good for pain conditions because pain is harder to prove.” — Rebecca M.
16. “See if you can find a disability advocate if you can’t afford an attorney. They typically charge a little less than attorneys, and only take their percentage from your initial disability check if you get approved. If you don’t get approved, they don’t get paid, so they work twice as hard to get you approved.” — Julie B.
17. “You will get the same questions to fill out multiple times, sometimes in different formats, sometimes in the same exact formats!” — Michelle M.
18. “Keep in contact with your evaluator. Having a good relationship can help you to know what other documentation you might want to dig up. I was able to avoid an extra evaluation at one of their doctors by providing a workers comp report that he felt was more thorough than theirs would be.” — Rebecca M.