Here We Go Again


Only 3 months after I started the whole Social Security Disability process from scratch once again, a letter arrived. Feeling the weight of the envelope, I held out hope that it was finally a favorable decision. For those of you who have been following my journey, you know that it’s been 3 years since my battle with the Social Security Administration began. If only my case number ended up in the hands of someone who knows what Cervical Dystonia is…Tearing open the envelope with equal parts dread and anticipation, there it was. Denied again. What were the reasons this time? Let me count the ways.

1. You have the ability to stand and walk without assistance.

Oh, so if having Cervical Dystonia meant that I was confined to a wheelchair, I needed a cane or had to use a walker, then you’d approve me? Apparently, it doesn’t matter that I need to stand while leaning against a wall or pillar. My amount of standing time is limited, as well as the distance I can walk. And what about the fact that I need to hold my head up with my hands when I’m doing both of these things?  This makes me qualified to work. Hm…

2. You have the ability to use your hands and arms to perform tasks.

They used that one on me last time.  While I can’t lift most objects, reach above my head, push or pull things, or use either my hands or arms very long because of my chronic pain, I’m still able to work.  Somehow, it doesn’t make a difference that I need to take breaks and rest after doing a “task” for only a few minutes. Filling a glass with water, using my hands to put food into the dishes of my furry kids and being able to push down on a door handle are enough to make my resume one that would put me at the top of the list for any employer.  Again, both my arms and hands are being used to hold my head up unless I’m sitting in a reclining chair.  How did that fact get pushed aside?

3.  The pain caused by your condition is not severe enough to keep you from doing basic daily activities.

In other words, I’m supposed to be lying in bed all day and let my pain take away my life?  Yes, I can dress myself, WITH breaks.  Yes, I can eat meals, WITH breaks.  Yes, I can wash dishes, WITH breaks.  Not because I want to and am painfree.  I have no choice.  I don’t have anyone else to do these things with me.  I’ve been trying to teach my dogs how to clean the house, but they just haven’t picked up on it yet.  How is having an average pain level of 7/10 not severe enough for these people who are determining my fate?

4.  Your depression does not severely affect your thinking abilities.

First, I never claimed to have depression on my application.  While it is easy to get depressed when your life becomes so limited and isolating, I have worked hard at learning skills to help me cope.  Should I really be punished for that?  Apparently, I need to be so depressed that I can’t even get out of bed.  Then  could I get approved?

What I wrote was that my Cervical Dystonia and my medications were impacting my thinking abilities.  Being tired all the time, having common side effects from every one of my medications that include memory loss, confusion and ability to focus, and having a heart that’s working overtime due to my pain…They all undoubtedly contribute to the claim I made on my application.  I now forget things that may have been said to me.  I have to go back and read something repeatedly because I didn’t get it the first couple times.  And I have to take more breaks because I’m not able to focus on something for very long.  These are not descriptors of the person I was before Cervical Dystonia, and I don’t take this lightly.

5.  In combination, your impairments are not severe enough to be disabling.

Did I read that correctly?  It sounds like they’re telling me I don’t have a disability.  Please come sit in my shoes for a day.  I would love for all of you determining my fate to live with Cervical Dystonia.  I would gladly exchange it for the job you have.  Then tell me again that it isn’t disabling.

I have been at this long enough to know  the government wants me to give up.  Sometimes I wonder how severe my symptoms will be when I get approved for SSD and don’t have the incredible weight this whole process causes pinning me down.  Would I actually be able to become a productive member of society once again?  Getting approved for SSD isn’t a life sentence, and when I get approved, who knows?  Maybe, just maybe in this world where there is no cure for Cervical Dystonia, I will get better.  But not getting approved for SSD when I truly can’t work is a life sentence.  To the people at the SSA, I will tell you a secret.  Your continued denials make my symptoms worse. Why would I put myself through this battle if I could truly work? Why would I allow my back, shoulders, neck and head to be injected 25-30 times every three months?  And why would I continue to take a hit on my financial security if I could perform a job with only my arms, hands, and the “ability” to stand and walk without assistance?  I wouldn’t.  That’s the secret.  What I don’t understand is why you continue to dismiss everything I have shared about my disability as if it doesn’t exist.  If only you could experience it yourself…

My Hopes:  What would your hopes be if you were in my situation?  My main hope is that I don’t have to continue to slam my head against a brick wall, because it really hurts.  I wish that our legislators would get Cervical Dystonia added to the SSD Blue Book immediately, so that those of us who live with it, don’t have the suffering heightened by having to constantly prove we are disabled.  And I hope that the case examiners at the SSA start looking at the many reasons why we ARE disabled, rather than the few “reasons” they claim we aren’t.


10 thoughts on “Here We Go Again

  1. Michelle, I am very sorry to hear about your denial! I know it is probably not much consolation since it isn’t the first denial, but in this second go round, it is the first denial where most people with dystonia unfortunately get this very letter and have to re-apply. I can feel your discouragement, yet feel confident that this time the process will work in your favor.

    Liked by 1 person

    1. Since the letter says I need to send in new information for my appeal, what do you recommend, Tom? I guess I could ask two of my doctors to write letters and write specifically what they’ve recommended because I can’t do daily chores, etc. I see new neurologist on the 18th but want to see how that appointment goes.


  2. Thank you for continuing to educate all of us on this condition. I can only imagine that there are others facing the same difficulties. Hang in there.

    Liked by 1 person

    1. My movemement disorder spec told them I was getting worse with out my knowing so that is who they go by.I got a denial and wrote them back and said all the things I could not do.Like go to a grandchilds sports game and watch the whole thing or do a full grocery shop without having to sit to get the neck and pain back in to were you can funtion again.Tell them a day in your life from morn to night.Good luck hun.Also when I went to the nero I was kinda nutso with pain so he was not lying he just thought I was crazy lol good timing for me

      Liked by 1 person

  3. I have friends who are in powerchairs but who have little or *no* pain, can work and do any tasks themselves, and yet their disabilities are considered more “limiting” than yours & mine. This is the dilemma for those of us who look “normal” because we are not in a wheelchair or otherwise visually very different from the societal visual ‘norm.’ Your situation is so rotten. I am APPALLED if *not* surprised. 😛


  4. Thanks for resending. I, too, am so sorry this continues to happen. The organization for your illness should write letters on your behalf.


  5.   busrkheatswick 2November 18, 2012yes there are many more sto­ries i can tell! prob­a­bly will over time! lolI would love to share the story with you it is a total mir­a­cle. I’ll work on typ­ing it up and email it too you.


  6. Really? Everyone I've ever suggested that to has looked at me like I've been licking a toad. I guess either we're both mad or we're both sane. 🙂 But it does puzzle me that so many people here are down on the states when it could so easily be the best thing about the place if they could truly compete for citizens and didn't have to kowtow to Canberra all the time.


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