Guest Molly Clarke - "Migraine and SSD"

Molly Clarke is the Social Media Coordinator for Social Security Disability Help and contributes regularly to the Social Security Disability Help blog.

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What You Should Know about Applying for SSDI or SSI with Migraines

If you suffer from migraines, you already know that they can be debilitating and often result in significant time lost at work. However, you may still be wondering whether or not your condition is severe enough to be considered a disability and therefore qualify you for Social Security Disability (SSD) benefits.

If you have questions regarding migraines and disability benefits, look no further. The following article will provide you with a general overview of the disability benefit programs and will give you the information you need to begin the SSD application process.

SSDI and SSI

SSD benefits are governed and distributed by the Social Security Administration (SSA). The SSA currently operates two main programs that provide benefits to individuals who have disabilities. These programs are Social Security Disability Insurance and Supplemental Security Income (SSDI and SSI, respectively).

SSDI provides financial assistance to disabled workers and their families. To qualify for SSDI, applicants are required to have earned an income and paid taxes into the system for a specific amount of time.  SSI is a needs based program that provides benefits to elderly and disabled individuals who earn very little income. To qualify for SSI, applicants cannot exceed very strict financial limitations.  In some cases, individuals may be able to qualify for benefits from both programs.

Learn more about the technical eligibility requirements for SSDI, here and SSI, here.

Definition of Disability

Although there are very specific medical requirements that individuals must meet in order to qualify for benefits from either program, there is one basic requirement that all applicants are required to meet—and that is matching the SSA’s definition of disability. The SSA considers a person disabled if they meet the following criteria:

• You cannot do any type of work.
• Your disability has lasted or is expected to last at least one year or result in death.

Migraines and Social Security Disability Benefits

Typically, the SSA uses a guidebook of disabling conditions—called the blue book—to determine whether or not a person qualifies for disability benefits. Unfortunately, there is no listing in the blue book for chronic migraines. Although this can make it more difficult to qualify for benefits, it is certainly not impossible.

Individuals that get migraines as a result of another medical condition may be able to qualify under that condition instead. You can access a list of all disabling conditions, here.

If you do not meet or match the requirements of another listing, it is still possible to qualify. Rather than proving that you meet specific medical criteria, you will have to prove that your migraines regularly prevent you from performing work activities.  This may include concentrating, following directions, walking, standing, lifting, or interacting with others. The SSA will also evaluate the frequency and duration of your headaches to determine how much time away from work your condition may cause. It is important that you provide evidence of any other conditions you may also have. This is due to the fact that the SSA will evaluate the combined effects of all conditions that you have, rather than just the effects of your main condition.

Because your condition is not listed in the SSA’s blue book, you will have to provide the SSA with extensive medical documentation to support your claim. This documentation may include records of the following:

• Your diagnosis.
• Any hospitalizations or medical appointments.
• Any treatments you’ve received and your response to them.
• Any lab tests or diagnostic imaging.
• Written statements from doctors and former employers that explain how your symptoms affect your ability to work.

Social Security Disability Application Process

Once you are ready to begin the SSD application process, you can do so online or in person at your local Social Security office. You should have your medical evidence as well as employment and financial records readily available.

It is important that you realize how difficult and complicated the application process may be. In fact, many initial SSD applications are denied. If your initial claim is denied, it is important that you do not give up. You are allowed to appeal this decision and continue to seek the benefits you need to survive.

For more information about the Social Security Disability application process, visit Social Security Disability Help or contact Molly Clarke at mac@ssd-help.org.

2001: A Space Odyssey: "I am putting myself to the fullest possible use, which is all I think that any conscious entity can ever hope to do.": (Day 30)

Hi there,

   It's ok to cry.

    I know that this pain is really scary, and that your head really hurts, but it's ok to cry. Nobody's going to see you here, and even if they do, crying doesn't mean that you're a fraidy-cat or a baby.

   I'm not saying that you should cry all the time. That doesn't do any good. But when something like this happens, when it feels like gnomes are jumping up and down in your brain on pointy pogo sticks, or you're wearing a hat that's too tight and you're scared, it's OK to cry.

   Crying is something that shows.  People don't know anything is wrong unless you tell them. They can't see your headache. Sometimes you can talk to them and tell them your head hurts, but sometimes, I know, your head hurts so much, talking doesn't make sense. It's OK to cry then. Crying is a form of talking when you can't talk with words.  It's your body talking.

  You don't have to pretend your head doesn't hurt.  That pain is real.  It is.  Real things matter.

  I know that in the book  "The Twelfth Easter Bunny", the child who never cried got the most beautiful egg.  But you want people to get to know YOU.  You're not some kid in a story book.  This is real.  This isn't make believe.  It's OK to play make believe with your friends when you don't hurt, but then you put away the dress-ups and the toys and you are you again.  And right now, you hurt.

  And right now, it's OK to cry.

Love,  
Gretchen, Who's Been There

Misfits: (Day 29)

   The prompt today is free form, with no guided suggestions except for one: that if I suffer from Chronic Migraine to make sure to incorporate it in my blog today. So I hereby incorporate Chronic Migraine in today's blog.
   However, I don't think that it's fair for me to just incorporate Chronic Migraine, as that's not the only kind of migraine that I deal with that makes me stand out from the crowd.

Chronic Migraine -I'm a Misfit

     A purple ribbon symbolizes migraine awareness. The red stripe symbolizes the chronic status. In order to be diagnosed with chronic migraine, a sufferer needs to suffer from migraine at least 15 days a month. So over half the month. This is to differentiate from episodic migraines, where a person will "only" have migraines either a few days a month or less often.
    But remember, I don't have regular chronic migraine, I have Status Migranous. This simply means that their migraine has lasted for more than 72 hours straight. So a person who has a migraine for three days and then has it break on Day Four, has suffered status migranous.
   I guess you could say that I'm an over achiever in the chronic migraine/status migranous spectrum. That whole - I haven't had a day without a migraine for over 11 years - bit, since early fall of '01 when I got an eight week debilitating migraine that just decided to stick around pretty put paid on me fitting in with most of the "Normal" migraine community. But that's ok, I was already a misfit.
   

Pediatric Migraine 
- The Beginning of Being a Misfit -

    The pink and blue stripes symbolize the boys and girls who suffer from chronic migraine or chronic daily headache. By age 15, one in ten children will have suffered a migraine. I find this a horrible statistic, as it goes unrecognized. And yes, sure, some could argue that it's only 10% of school aged children have or will suffer a migraine, but I think that it needs to be paid more attention to in general. 

    I know that I've had migraines (or at least headaches) for as long as I can remember. I remember hiding under the stairs in preschool, sobbing because my head hurt and I didn't want to have to go outside and play with my friends. I think I was maybe 3 or 4? I just grew up with the migraines. I didn't like them, they hurt, but, as a really little kid, I thought that it was just a part of who I was. And so it was. The migraines grew with me, getting more severe with age. 

    I started to really stick out from my peers in mid-school when my 2 week migraine runs turned into 4-6 week migraines, and then, finally, the infamous 8 week migraine happened and all bets were off.

Chronic Migraine & Depression

 - How I Stick Out Even More -

    The purple ribbon with the black half-stripe represents depression. Chronic migraine and depression are often found together as they're both have roots in chemical imbalances of various chemicals and signals in the brain. That's why antidepressants can effect migraines and migraine medications effect depression. 

    When I was forced out of school in the spring semester of my junior year because of my migraines, I went into to a depressive episode that lasted for close to two years and was so severe that I started to shut down my organ functions and was sleeping up to 20 hours out of 24. It was a terrible time, and during that time I just shoved everything in a "deal with it" pile, rolled over, and went back to sleep. Sleep was my only vaguely effective painkiller. But it was causing its own problems like the beginning hints of body shutdown. 

    Fortunately for my sake, I had a wonderful support system that eventually took a metaphorical cattle prod to me and made me wake up and get better. And by "get better", I obviously don't mean that I got cured of my status migranous. What it means is it made me wake up and face reality in a way that many don't ever have to.

    I've now been going to both a psychiatrist and the cattle prod holding body-centered psychotherapist for so long that I've basically lost track of the years; I think 6 years? And when I really decided to take advantage of the opportunity I was given, I learned to look at my migraines, and my life in general, in a way I guess most people never get. 

    I've been made aware of just how differently I view things like the pain of my chronic migraine through this month's prompts when I've been surprised or taken aback by what I perceive as negativity about the migraines. I've come to accept the pain as a part of Life. I don't have to like it, I just have to accept that it is there, only then can I move on to finding the positive. I'm almost afraid that people reading these entries will think that I've given into the pain, or else I'm faking how badly I hurt because I don't have it effect my life the way that it seems to most chronic migraine suffers. 

Chronic Migraine Trifecta
- The Last Way I am a Misfit-

    So I have now given three ways, Chronic, Pediatric, and Depression, in which I am a misfit from most of the migraine community, making me stick out like a sore thumb in most online communities. I'm learning how to blend the edges of what I think with what is appropriate for the situation. And yet again, I am a misfit. For while I may be a perhaps extreme case of each of the examples given, there is a badge for all three ribbons to be displayed at once already made up. So I am a misfit by not being the total misfit that I first appear.

Quantum in me fuit,

Gretchen

Saturday Night Live: (Day 28)

How does humor help you cope?

   Humor is a huge help for me. Life's a giant cosmic joke, after all, and, as the saying goes in my family, "Laugh; it drowns out the screaming."

   Keeping a good sense of humor is key to dealing with things like Migraines that can be viewed negatively. I'm reminded of the part of Harry Potter and the Prisoner of Azkaban where the class is learning to face the Boggarts, which take the form of whatever the witch or wizard facing it fears most. The spell to defeating the boggart is to make it ridiculous by making it appear differently. Laughter is it's enemy.
   Pain, I've found, is much the same. First, you have to realize I don't actively laugh at my migraines. Not usually at any rate. But finding humor in the situation, or at least minimizing the negativity is huge.

   Also, watching comedy of a certain caliber; that which entertains, but isn't obvious, can effectively distract me from focusing on the level of pain I am, and rather can immerse myself in the plot. Reading books with a similar level of entertainment value can do the same thing.
   I need a happy ending. I don't do well with tragedies, especially when I'm in a lot of pain. But books that have triumphs over tribulations can be very pleasing and uplifting. But comedies are the best.

Quantum in me fuit,
Gretchen

Anger Management: Goosefrabba: (Day 27)

How do you constructively deal with the anger and resentment that arises as a result of living with Migraine/Headache Disorder?

   Eep! This is a very agitating prompt. I even originally censored it in my mind, changing "anger and resentment" to "frustration", while typing it up, and I have an excellent memory for words. I just find that is is a sad commentary on the mindset of most sufferers.

   Sure, occasionally I'll pitch a fit when something goes to heck because of my migraines, but that's frustration, not anger, and certainly not resentment. What am I to resent? The migraines are a part of who and what I am. To resent them would be to resent myself, and yes, I've tried. It's a singularly unhealthy mindset, and I've spent years in therapy trying to undo the damage that approximately 14 months did to me back in 'o5-'o6.

  I think if we (the Migraine Community) focused on more positive phrasing, or at least less negative seeming, maybe we as a whole could come to accept the pain a bit more, and then be able to move forward with our lives.


Quantum in me fuit,
Gretchen

Men in Black: Migraine Neuralizer (Day 26)

How do you cope with the way Migraine/Headache Disorders can impact your memory?

   Irony; oh how you sting! Allow me to explain:

   No sooner had I typed the prompt and began to think about how to answer it, but my phone rang. And, I learned, somehow back on May 25, I didn't complete a PayPal order the way that I thought that I had, and thus the product never arrived. What's even more slightly embarrassing is when I had been asked about getting the package (I supposedly had ordered three that day) I said I'd gotten it. I counted one box twice.
   Whoops. And now I'm suppose to be answering how I deal with a memory that's such that things like this can easily happen.

   I laugh. I mean, sure I'm embarrassed right now, because I really was proud of how well I was doing at juggling two things at once, and apparently I'm not doing as well as I thought. But there's no point in getting angry, because there's nothing that I can do about it, and it's not my "fault". I know that I had a migraine spike the day that I was doing the ordering, and now here's the fallout. It's just something I have to deal with.
   I've corrected the forgotten payment, and everything's as good as it can be. It'll just be a month late, that's all.

*shakes head*

   What a perfectly timed snafu.

Quantum in me fuit,
Gretchen

Lincoln: (Day 25)

Who's your favorite historical character that lived with Migraine or another Headache Disorder?

   I think that at the moment, one of the historical people who suffered from migraines I identify most with the author, Lewis Carroll.

   This is not only because of the migraines, including the somewhat less well known, yet aptly named, "Alice in Wonderland Syndrome", but because he also lost consciousness on occasion. (Source) And while at the time, this was thought to be a rare form of epilepsy, something I fortunately do not suffer, I used to lose consciousness due to my migraines, and the lack of control over one's surroundings that happens in such a situation is something I understand quite well. Having three conditions in common with the great man, plus a shared interest/profession makes me interested in Carroll's migraine history.

   In addition, the way that Carroll thought, most likely while suffering a migraine, is very familiar and comforting to me. I remember reading his complete works when I was eleven or twelve and my migraines beginning to majorly impede on my life. Poems like "You are Old Father William", or the more famous "Jabberwocky" seemed to make perfect sense to me. It didn't really hit me that the words were made up and supposed to be nonsensical any more than, say, Dr. Seuss's books. It was really all one and the same to me. I could create my own ideas of what the mome raths from "Jabberwocky" were like.

    I didn't know that micro/macropsia was called "Alice in Wonderland Syndrome" until long after I'd begun to experience the sensations. I thought it was just my brain being odd, which, in a way, it is. But at least it's not being uniquely odd for a change. The sudden shrinking/growing sensations are some of the most disconcerting things I've ever had to deal with. It's about a million times worse than going quickly down in an elevator with your eyes closed.

As for the loss of consciousness, mine has been diagnosed as vasovagal syncope, which is an almost meaningless diagnosis. "You pass out when your veins dilate" said in Latin is much more impressive, however, so they went with that. There was a question of my having epilepsy long before they considered the problem being my heart, however, and I had a multitude of tests to prove that I wasn't an epileptic. These tests, naturally, weren't around in Carroll's time, so the rudimentary diagnosis is all that we'll ever really have. But still, it's an interesting similarity.


Quantum in me fuit,
Gretchen

Risky Business: (Day 24)

Each time you try a new treatment, you take a risk. How do you initiate a discussion with your doctor  so you can make an educated decision about trying it as a team.

   Wow... I keep sensing such a feeling of distrust in these questions whenever it comes to speaking to your doctor. I don't know if I'm phenomenally blessed, I suppose I must be, but I've never really found it to be much of a need to "initiate a discussion"; it just... happens.

   My psychologist and neurologist, the two doctors that deal with the prescription meds that can affect my migraines always consult not only each other every time that there's a med change being discussed, but they include me in the discussion. Maybe this is because I have been seeing each of them for close to ten years, and they've watched me grow up and learn the basics that I, as a patient, ought to be concerned with through osmosis basically. Monkey see, monkey do, and all that.

   I'm also a forceful enough personality that if I don't understand something, I'm not going to passively fade off into the sunset when it comes to my health. I'll bulldog the issue and just keep harping on it until I get an answer with which I'm satisfied.

Nobody can take care of me better than me, after all.

Quantum in me fuit,
Gretchen

Bruce Almighty (Day 23)

How does spirituality and/or religion help you cope?

    I must preface this with the fact that I'm not terribly religious. I know enough of many organized religions to pick and choose bits that seem to resonate, and come up with a conglomeration of my own creation which is incredibly difficult to actually describe adequately to another. Suffice to say, I'm a spiritual humanist.

   From Buddhism comes the idea that All is suffering, and that the path to enlightenment is through letting go of the material world. This is almost exactly my philosophy regarding my life with migraines. I'm going to suffer pain. I know and accept this as fact. There's not a time in my life that I can recall not having migraine pain, so I don't particularly object on personal basis but rather on principle.
   In order to learn to survive with my chronic migraine, I've just learned to detach from the reality of the pain, and focus on something, anything in my body that is pleasant, neutral, or even just less negative than my head. Then I'm able to gain a bit of functionality back.

   From Hinduism, there is ॐ (Om), the primal sound. It's almost as if, at the basis, there is a common element of understanding for all. In my life, it's pain (migraine), and, for whatever reason, I tend to gravitate towards people who have also heard the meaning of pain. Ganesh, the Remover of Obstacles is also special to me, as I can think that there's some being out there pulling for me in a way my friends and family can't.  

   The pagan beliefs which revolve with the sun and moon, with the ebb and flow of power also makes a lot of sense, as the patterns of my migraine pain changes with the changing of the seasons and amount of daylight. 

   There are many others, but these are three examples of the kinds of things that help me cope.

Quantum in me fuit,
Gretchen

Walk the Line: (Day 22)

How do you balance the need to avoid your Migraine/Headache Disorder triggers with equally powerful need to enjoy the things that give your life meaning?

   How sad I find this question; to think that I have to avoid my migraine triggers in order to give my life meaning. I'm in one of my trigger areas right now, but that's not stopping me from finding meaning in my life at this moment. On the contrary, strength rises in the face of adversity. That isn't to say that I go out seeking my triggers, be they food, occupational, or physical, but if I happen to run into one of them, I take the pain that comes and keep going forward as best that I can.

   Take right now for an example; it's 4:45 AM, I've been awake for close to three and a half hours already today. Sleep deprivation is a huge trigger for me, and I'm not supposed to take naps during the day if it can possibly be avoided. So am I possibly triggering myself, yes. Not on purpose, I just awoke! and that was that this morning. But while I'm being sleep deprived, I'm getting my blog written and ready to publish. Writing down my experiences and sharing what I know is one of the ways I give my life meaning.

   Going at this question another way would end up with the same result of me not letting the one really get me down. Since I've had migraines for as long as I can remember, and the same migraine since fall of 'o1, I never really got the "Before" lifestyle picture. That's one thing for which I'm profoundly grateful. I don't know a life without migraines, or how I even would live one, and thus it's not a Big Deal for me to have the pain come along and want to play as well, no matter how ill timed it might seem to the rest. I take it as the pain comes and be grateful for what I can get.

Quantum in me fuit,
Gretchen