Keep on Movin’!


As you may have noticed, I’ve been on a short sabbatical.  I had to, in order to devote time to starting the whole Social Security Disability process over from the beginning.  Why do I need to endure this again?  If you don’t yet know the bad luck I had of being assigned a federal judge who only approves 2 out of 10 people, here’s my story.  For those of you who know about this continuous battle, the good news is I finally submitted my online application today.  Is there anyone else out there who’s had to start the whole process over a second time?  Based on the people I’ve spoken with, I feel very alone in this regard.  Maybe I’m one of the “chosen few”, so I can help others learn from my experience.

Whether you are filling out a new application for SSD or you know someone who is, here are a few lessons to help you on your journey.  Never give up!  That’s what the Social Security Administration wants you to do.  But if you truly can’t work, you deserve to receive disability payments from our government.

1.  There are resources available.  Ask everyone you know, whether it be doctors, clinics or a community of people who also have your disability.  In Minnesota, I found out that Courage Center has ideas for references, in addition to the Disability Linkage Line.  Not only does this phone number have ideas of people who can help you fill out your application, but they also partner with groups who can help you in your home.

2.  If you are filling the application out on your own, ask a couple friends to read it over.  When you have a disability, you forget that the very same language you commonly use to describe your disorder is going to confuse the people determining the status of your application.  For example, one of my readers advised me to write “my neck and head twist to the right and stay in that position” rather than “my neck is pulled to the right”.  What does “pulled” look like?  Give them a visual.

3.  If you have a legal represenative who wants you to fill out the initial application on your own, is there an advantage to physically going to the SSA office for help?  The short answer is no.  The people who help you fill out the form are not the same people who decide if you are approved; they don’t send notes regarding the symptoms they personally observed when submitting your application.

4.  If filling it out online, SAVE, SAVE, SAVE!  I learned this the hard way when I found out the site shut down for maintenance every night.  At 12:01, all of my remarks were lost because the website doesn’t save information automatically.

5.  If you are having to start over from the beginning and are applying online, you should know that the government makes you wait 2 months from the date you received your federal hearing denial letter (or any denials beyond the hearing stage).  Call your local office to see if the same holds true for walk-in applications.

6.  For those who choose to fill this out on your own, you have control over what information goes onto your application.  My first time around, a legal representative in Maryland asked me questions over the phone and then sent it in.  To this day, I don’t know what she wrote.  By doing this on my own, I was able to accurately describe my Cervical Dystonia symptoms and how they make it impossible to continue working and complete daily tasks at home.

MY HOPES:  I hope you can learn at least one thing from my experience so you or someone you know doesn’t have to learn it the hard way.  Never stop asking questions, even if you have to ask the same people the same question repeatedly.  For 4 years, I didn’t know there was a Dystonia support group in my area, even though I asked my doctors repeatedly.  2 years ago, I finally got the answer.  And know that when you call a resource like Courage Center, you may have to talk to 3 or 4 people until you find the right person.

My hopes for me are that I continue to ask questions and never give up.  Unfortunately, the whole system for Social Security Disability is designed to “encourage” you to do just that.  Considering the fact that they only give us 5 years to get approved, I was beside myself when I saw they were going to make me sacrifice 2 precious months before I could apply again.  That’s part of their game.  How many hoops will you choose to jump through?  Let’s shock the system by jumping through them all, no matter how difficult they may be.  We have to keep on movin’.  It’s our only alternative.


12 thoughts on “Keep on Movin’!

    1. Thank you! It’s definitely a journey. Hopefully, one of these days Dystonia will finally be added to the SSA’s blue book so we don’t have to endure all this stress on top of the disability.


  1. Hi Michelle, great advice on point 2 and something I probably didn’t think much about the first time around. I am currently going through this process all over again as well. I was just curious what you meant at the end when you said “they only give us 5 years to get approved”? I thought since you are filing a new application for disability you are pretty much starting over from scratch again.


    1. Our 5 years start from the time we stopped working, and it unfortunately doesn’t matter how many times we start over, Tim. In the letter from the judge, he/she should’ve written a date on there that is the last day for that person to be able to be approved. It’s crazy, I know. From what I gather, it hasn’t always been this way. I’ve heard from people who say it took them much longer than 5 years to get approved, and I’m curious when this policy was changed. Just seems like one more hoop to jump through! Here is a link that talks about it. Hang in there!


  2. Good luck micshaw. I have worked in this field for 13 years and it has gotten worse each year. I represented disabled individuals at Administrate Law Judge (ALJ) hearings for four years. It started out that if denied at application it would take 14 months to get benefits if you won. Today it will take about 34 months to get benefits if you win. When I started about 65% of cases at the ALJ level were won. Today SSA says that number is now 45% but if you do the figures (I have) it comes out to less that 30%. In my blog I have discussed why this is and what can be done about it. Again micshaw, good luck and my best wishes to you.


    1. I am so glad we connected. I’m looking forward to reading your blog to hear what your experiences were like as an insider. So it sounds like my judge who had a 20% approval rating to begin with isn’t the exception. It’s so frustrating to hear about people who have been approved for something they can actually control (a friend told me yesterday about her friend who won because of her obesity), yet I can’t choose whether or not I have Cervical Dystonia. Thanks for becoming a part of my journey.

      Liked by 1 person

      1. Actually, obesity is considered a disability if there is a defining reason outside of just eating too much. A thyroid problem, etc. I have thirty some blogs on my site right now. If you go back to the early ones you will see facts and reasons for Social Security not allowing many on and getting a whole lot more off at their Conditional Disability Reviews (CDRs). Because so many are now being denied and getting kicked off disability benefits I have decided to try and help them. Social Security disability is quickly running out of money,so the need for them to cut back as much as possible. I understand that. That does not help those that have a disability. However, having a disability does not mean one is totally disabled. If you go to the early blogs on my site and read “Until I met a Man” and “Until I met a woman”I think you will understand what I am saying. Please keep me advised as to how your reapplying is going. My Best. Don


  3. I do understand the medical issues some face with obesity. That doesn’t apply to the person I was talking about who has a horrible diet, refuses to exercise, or do anything else that would help her lose weight. Her friend has tried to get her to change her lifestyle, but she doesn’t want to have to work. Unfortunately, that’s one of the reasons they scrutinize the rest of us who truly are disabled, which isn’t right. I will definitely keep you posted.


  4. Fantastic advice, Michelle. Fingers crossed for the second time around. Hang in there! In the meantime, we need to get as many people as possible to vote Democrat, the party that supports spending on social services for needy people.


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