The Elusive Process of SSA Disability Benefits

Because most adults with moderate to severe Cyclic Vomiting Syndrome (CVS) and Abdominal Migraines have a difficult time maintaining employment, it is to no surprise that we apply for disability benefits out of necessity.  However, because CVS is a digestive functional disorder, it is difficult to obtain Social Security Administration (SSA) disability benefits. That is because the SSA believes that digestive disorders should heal or become manageable within one year via medication or surgery; therefore, digestive disorders are one of the hardest types of disabilities to prove to the SSA.  Also, CVS and Abdominal Migraines are functional disorders, which means that even though our body is impaired and not functioning properly, under examination and tests, the body looks completely normal.  For example, when you have a headache, there is pain, but no tests will indicate any abnormalities with your brain.

It is clear that CVSers are already at a disadvantage because not only is our illness rare and misunderstood, but also our ailment is a digestive functional disorder.  Additionally, CVS is also classified as a neurological disorder, more specifically, a migraine variant.  As much as you and your doctor know that you need disability because of your high frequency and long duration of your episodes, it is the SSA that you will need to prove how sick or disable you are.  You will need to prove both how your illness or disability interferes with being gainfully employed, and how it negatively affects your life and the lives around you.

The first time I applied for SSA disability benefits, I was in college.  Because I spent my college career mainly going to the ER and always playing catch up, I felt as though it would be advantageous to apply for disability since my illness negatively impacted my ability to learn and to attend classes. In fact, I missed about fifty percent of my classes.  I decided not to use a lawyer because I was so convinced that it would be a no brainer since I spend most of my life being sick rather than being well.  I remember the day when I received my determination letter from the SSA.  It was a nice, sunny Spring day and because I was so ecstatic, I ran to my college's Health Center like an excited child running to an ice-cream truck.

However, my glee quickly turned into disappointment and burning frustration because they didn't approve me.  I felt my heart sink to the floor.  The reason why I didn't get approved was because they believed that I still could find “gainful employment” even though it was clear I had a debilitating illness.  Say what!  Are they really serious?  I almost could not contain my frustration and in response to the letter, I called the SSA sobbing and told them that they should find me a job or better yet have me work there so they can see how unreliable my illness makes me.

I wanted to appeal the SSA’s decision but my graduation was my priority and I am happy to say that I graduated with honors.  After that, the next goal was finding a job and, most of all, keeping it.  After all, the SSA deemed me healthy enough to work, and I thought that if I had the will to stay well, then, I wouldn’t need to file for disability again.  However, that was just wishful thinking at best.             

I received a part-time job from my alma mater but after a few months of presenting great work, I was asked to resign because I missed a lot of work being sick.  Since my alma mater worked with me so that I could graduate, I naively thought that they would work with me, but again, that was wishful thinking.  When they asked me to resign, that was when it hit me like a hammer to a nail; the world doesn't take kindly to sick people.  Sick and disabled people are considered taboo and a burden to society.  At work, we are considered a liability rather than an asset.  That is why we end up applying for disability because we learn that no employer wants to work with a sick or disabled employee over a healthy one. And they say discrimination in the workplace is not tolerated.  What a lie that is!  For instance, one of my bosses sent me an email stating how I should cut my losses and quit because she needs someone 100% healthy.  And yes, I took this matter up with Human Resources because she was discriminating against me based on my illness.

There are a lot of people that don't understand the process of applying for disability.  Just because you are sick a lot doesn't mean you will automatically obtain or qualify for SSA disability benefits.  When you apply for SSA disability for the first time, fifty to seventy-five percent of people automatically get denied.  In fact, when you are looking for a lawyer, he or she will advise you to apply on your own first and come after you are denied.  That’s because when you appeal, your odds are slightly better since fifty percent of people will get approved.  If you are really sick, it's your job to convince the SSA that you deserve and need SSA disability benefits with or without a lawyer.

Here is some helpful information in regards to applying for SSA disability benefits.  First of all, there are two programs for the SSA, the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).  These programs are based on your age, your education, your employment and medical history, and your medical condition.  The main difference between the two is that SSDI is available to workers who have accumulated a sufficient number of work credits.  On the other hand, SSI is available to low-income individuals who have never worked or who have not earned enough work credits to quality for SSDI.  Additionally, SSI has nothing to do with work history, but mainly on financial need. You can receive both SSDI and SSI if your SSDI benefit is too low.  SSI is then used to make up the difference.  Also, your premium also depends on any other income you receive and what state you reside.  After you have applied, you should expect 30 days up to 12 months for the application to be processed.

If you are appealing the SSA's decision, collect your own medical records from all of your past and present doctors, and if you are a frequent flier to the hospital, go to the medical records office and ask them to give you a list of all the days you were in the hospital in addition to your medical records. Furthermore, I would suggest you go to your past employers and ask them to write a letter on your behalf detailing how much your illness limited you from completing the basic job descriptions.  In addition, contact your school, and have the administration write a letter detailing all the accommodations they made for you so that you could succeed.  Also, stay on top of the process and make sure everyone is doing his or her part.  Keep everything that is pertinent to your appeal and have the necessary information, such as:

·       Doctors names, email, and addresses

·       The date you became disabled

·       The dates of doctor visits

·       Test results, hospitalization dates 

·       Birth Certificate

·       Bank statements

·       Work history and resume

·       W-2 forms and current income

Sometimes people get denied from SSA disability because some doctors never hand in their paperwork, or they don’t do it in the time allotted.  That is why it is so important to gather your own records to ensure that scenario doesn't happen.  If you feel like it is necessary, get a reputable lawyer who specializes in Disability Law, both SSI and SSDI.  If you did try finding a lawyer, many clients run into law offices that only work with SSDI disability benefits.  While you may have a better chance winning your appeal with a lawyer, please do not leave all your faith in your lawyer. Rather, get as much information about SSA disability as possible.  Research it on the web, call agencies that offer help in applying for and appealing disability, go to the library and borrow as many books that will help you understand how to fill out the application correctly, and how to do an appeal, and everything that has to do with Social Security Disability and Medicare benefits.

I was awarded benefits in 2011 and I didn't use a lawyer.  Instead, I bought a book called Nolo's Guide to Social Security Disability.  Because I didn’t use a lawyer, I saved myself $6,000 of my disability back pay that only goes back 12 months prior to the date you applied.  That is called a contingency fee.  Moreover, other lawyers ask for a fee upfront for out-of-pocket expenses.   If you lose, however, the lawyer does not get paid, and I believe that is why they usually won't work with clients until they start the appeals process

The most important thing to know is that you must be prepared and stay on top of the process. Keep a track of your correspondence, names, dates, and times as a document.  If your medical providers fail to do their part, it will affect you negatively, because then, the SSA will appoint a SSA doctor who doesn't know you to determine your eligibility and that might work against you.  I would also like to note than when it comes to Medicare, it doesn't matter if you have SSI or SSDI.  When you are approved for either program, you will have to wait 24 months starting from the date of eligibility before getting Medicare benefits.  Once you are on Medicare, it covers only 80% of your medical expenses, and the patient is responsible for 20% of medical expenses.  Depending on your finances, some people look into supplemental coverage to take care of the 20% Medicare doesn't pay for while other people who lack the finances might qualify for government programs, such as Medicaid that will cover the 20% for which the patient is responsible.

In regards to CVSers and abdominal migraine sufferers, we tend to have other debilitating illnesses that we fail to highlight on our application.  Because CVS and abdominal migraines are not in my control, I have developed a bad case of anxiety, which is common for many sufferers.  Furthermore, when I applied again, I also added anxiety and depression to it.  

I suffered from these illnesses as a result of living with CVS and Abdominal Migraines but I was not diagnosed.  Because I was not diagnosed, SSA required me to see one of their state appointed psychologist to determine whether or not I had anxiety and depression.  After seeing their psychologist, I was diagnosed with anxiety, but not with depression.

When I re-applied, I filled out the application by myself without legal advice just as I did in college, but what I did differently was educate myself on SSA Disability and Medicare by finding pertinent books and agencies that provided the most comprehensive information on Social Security Disability. I sent my application out and three months later I was approved.  I called and asked SSA what I was approved for, and they replied that it was for both generalized digestive disorder and anxiety disorder. I am certain had I not used those resources, I would not have known how to correctly fill out the application and get what I deserved.

All in all, getting disability for CVS is very elusive and difficult, but it’s not impossible. Stay strong in your convictions and always fight for what you believe in no matter what.  Complaining about being denied disability will only add negativity in your life.  Instead, delete those negative thoughts and stay positive and motivated.  Then, look for an experienced lawyer to help you appeal the SSA’s decision.  At this point, having a lawyer will increase your chances of getting approved because the lawyer understands the system and knows exactly what moves are necessary to take to win. With that said, good luck on obtaining SSA disability, don’t give up, and be the CVS warrior we are all meant to be.

Am I Insane?

In my almost two decade career as a professional patient™, I am often bombarded with so many questions about my health from medical providers and laypeople alike.  This is because both my illnesses, Abdominal Migraines and Cyclic Vomiting Syndrome (CVS) are rare and mysterious disorders that amuse people when they learn more about it. 

The usual questions I am asked often refer to each of my illness’s symptoms and how they manifest. They ask what it’s like suffering all the time, how I manage to go on with life despite my not-so-healthy life, and how my disorders affect all aspects of my life, and how do I manage to still be somewhat successful in my life even though I am chronically ill.  I don’t know why anyone wants to know what it’s like to suffer, because I will never wish this suffering on my worse enemy.   That question always gets me, but these questions, however intimate and annoying they may be, are questions I can answer.  However, the question that always takes me by surprise is the following question: 

If I have such horrifying and traumatizing experiences at the hospital I still continue to go to, why do I continue to come back over and over again? 

Honestly, this is not an easy question to answer.  From an outsider looking in and from hearing all my near-death survival stories from the hospital, I don’t blame anyone for asking this question.  Whenever I need to get the patient advocate or social workers at the hospital involved in my care, they always bring up this question, and I don’t really have a great answer for them other than to question them on why they are the ones asking that question. 

But to start answering that question, I guess it’s similar to an abused woman who goes back to her abusive husband.  A financially, mentally, and physically abused woman often goes back to her abuser because even though her fear for her life is real, her mindset is that she has nowhere else or has no one for which to go back.  This is usually the case as it is classic behavior for the abuser to isolate the woman so that he is the only one that she can turn to if anything happens.  He acts like her hero, her knight in shining armor in the beginning, but that is only to isolate his woman and this makes it that much harder for her to leave him.  She doesn’t know what else to do other than to go back to him, the familiar, the known than to leave him, which is unfamiliar and unknown to her.

For me, in many ways, my hospital relationship is like that of an abused woman and her abusive lover. If you knew anybody in an abusive relationship, people often have a hard time understanding why the woman continues to stay, and why she always blames herself for his actions.  Of course, the outsider sees nothing but red flags all over the place in this type of relationship, and the outsider then concludes that she is insane, and has been brainwashed into believing her abuser’s promises to change. This is what battered woman syndrome is and I think that I have battered patient syndrome.

In the same way that the outsider sees something very wrong with the relationship of an abused woman and why she continues to go back, so too are people who think the same thing about me because I continue to go back to the very hospital that almost killed me on several occasions.  People can’t understand why I continue to go back to St. Mary’s after all the negative and traumatizing things they have done to me.  In fact, I developed PTSD after years of hospital abuse, and my best explanation for sticking with this hospital is that I rather stick with the familiar than the unfamiliar just as the abused woman would stay with the life she knows and that’s being with her abusive lover.  However insane that may sound to the outsider, in my mind as in the abused woman's mind, it makes sense.  Maybe her abuser might change and become better and maybe St. Mary’s might change and be better to me too.

Also, I have been to other hospitals and I had similar negative experiences there, and some ERs didn’t know how to help me, or they thought I was drug seeking because I asked for specific medications as not to reinvent the wheel.  I know what medications will treat me, and hooray for me for being on top of my own healthcare.  However, the minute you start asking for medication and their dosages, doctors automatically assume that I am drug-seeking, which is not really the case.  If anything, I am relief-seeking.  

Today, if I were to go to another hospital, both that hospital and St. Mary's will label me as a drug seeker since I have been at St. Mary’s for so long.  They will question my sudden change in my healthcare options.  Actually, I believe St. Mary’s wants me to go to other hospitals so as to refuse me when I come back to them; then, St. Mary’s Hospital is free of treating me and my many complaints and demands. 

What people don’t understand is that there are no CVS specialists in the state of CT, and the doctor I have is affiliated with St. Mary’s Hospital, and since I worked with him for so long, he is well versed on CVS because of our relationship.  With that said, this is one valid reason why I go back to that hospital.  Another reason is that I have been going to that hospital for over 17 years, and I don’t want to step out the frying pan and into the fire, so I stick with the familiar, and I am completely fearful of venturing off into the unknown. Perhaps, I might have a better experience elsewhere, but I don’t want to give St. Mary’s Hospital any reason to reject me from their services, which I thought was illegal, but it happens, because it happened to me this past summer.

They say that insanity is doing the same thing over and over again and expecting different results, and if that is the case, I am most definitely insane.  I am often wrong in my positive attitude towards my relationship with this hospital as I am often yelled at and berated by the ER staff. I tell myself this is not “exceptional care for every patient every day” like St. Mary’s motto boasts. It’s more like unexceptional care for me every time I go. But I still go, so that must make me insane.

While thinking about writing this blog, I came to the realization that the definition of insanity is not really doing the same thing over and over again and expecting different results.  If it really were, I will claim to be insane.  Rather that quotation is a catchy saying with no truth or fact to it.  Once I realized that, I also realized that I am not insane for going back to the same hospital.  I understand that my relationship is one sided since the medical providers are the ones with the power and the patients are powerless.   

In fact, I believe this power-dynamic is natural to all hospitals.  As a chronically ill person, I understand that no matter how hard I fight or how empowered I am, the doctors and nurses are the ones who hold the power.  And they can also retaliate in many ways, like making you wait for your pain medication, or lie about you to your doctor.  So when I am in the hospital, I fight all the time for my rights, and hope that this hospitalization will be a little better than the last time, and that makes me content.  It gives me a reason to go back to the hospital because maybe I might have a positive experience.  However, I won’t know if I don’t go back.  So instead of thinking of myself as insane, I realize that the best word to describe me is perseverant.  That is the method to my madness--Perseverance.

To be perseverant means "one's steady persistence in a course of action in spite of difficulties, obstacles, or discouragement." With that said, my relationship with St. Mary's Hospital is not a relationship based on equality and mutuality, but I am hopeful because I need to believe that things will get better because that is what makes me get out of bed every morning.  My perseverance is what keeps me alive and what allows me to have faith and hope.

All in all, my relationship with St. Mary's is not one of the greatest relationships I have had, but to think that I might have a different and better outcome is what keeps me going.  To be perseverant suits me, it insulates and protects me, and it allows me to keep the hope and faith even though I am engulfed with negativity in my life. I don't need to be negative because negative things happen to me.  If I allow my negativity to rule my life, only more negativity will come.  Therefore, I must stay positive no matter what.  In the end, it is my perseverance that allows me to be positive. It is what gets me up every morning and encourages me to live my life the best way I know how.