Applying for Social Security Disability
Navigating through a long process.
Many of us who are living with this “condition” know this isn’t something we would wish on anyone. We have the largest amount of empathy than most anyone else. We also know that this condition comes with highly diverse levels of functionality. For some people, they are able to go about their day, certainly not without pain or other bothersome symptoms that affect their day, however, they are able to continue to live as close to a “normal” life as they had previously.
I think many of us would agree that as much as we don’t think we do, we miss that level of function. The ability to be able to go about with our day as best as we can. Then there is the level of losing the ability to get through the day without taking breaks, using medication to control our pain, or taking a nap to try and regain some energy. We plod through the day as best as we can and at this point this condition has started to affect our work life. We begin investigating part time work or jobs that are somewhat less physically challenging. We have good days and bad days, but somehow we still are able to maintain somewhat of a manageable existence.
Then there are the remaining ones. The ones whose lives have been turned upside down, the ones whose lives are nowhere near a glimmer of what it once was. Our pain, discomfort and other symptoms have over taken our once normal existence. Our level of functioning has deteriorated to the point that some days it’s more taxing to take a shower than to do anything else, getting out of bed or off the couch is a chore.
Then there is our job, or career that we have had to give up because of pain, fatigue or any other host of symptoms that make it impossible for us to continue to work. What then, what are we supposed to do? Some of us are the sole providers for our household, the only income to survive on, others provide the secondary income. But when that income is no longer an option, what do we do next?
The next step that many of us have taken is applying for social security disability. We have no other option to help with the family income. But what does this process involve and how long to we wait? What do we do if it’s not approved? I will attempt to give you as much information as I can but keep in mind that I am not an expert, I’m plodding through this journey as well as many of you are and trying to learn as I go, I’m still in the process. But what I can give you is some advice in navigating this and what to expect. And but the end of this I hope that I am able to give some of you the information, courage, and support you need to get through this process.
Once you have made the decision to apply for disability, you will also need to decide if you are going to do it on your own, or if you are going to seek the advice or help of an attorney. Some people have done this on their own and been approved, others have used an attorney and not been approved. So there is not right or wrong way to go about it.
The best initial advice I can give you is to be prepared! Be prepared for a long process that will cause you stress, anger, frustration, and a hundred other emotions. My first go around with this process was on my own so the information I am giving you is based on my experience and things I may have missed the first time around. Before you even go online to start the process of applying, I would suggest you get all of your medical records in order as well as the most updated information you have available.
You can request a copy of your medical charts from the facilities that you have been working with. It is really important that there are dates, names of tests run, doctors who have treated you, and lists of medications. You will also be needing to provide a work history as well for up to 10-15 years previous so if you have an updated resume, I would suggest keeping it handy as well as any job descriptions you may have available if possible (not necessary, but can be helpful.)
Also, if you have any other paperwork that provides you with information related to your condition, you may want to gather that as well. Any and all treatments that are remotely related to treating or testing your condition/conditions will be helpful, chiropractic care, acupuncture, holistic care, physical therapy, water therapy, etc. Then, get yourself a folder to keep all of these things together, organization is very important!
The next step will be to go online to the social security website and begin the application process. Plan on at least 2-4 hours to complete the application online, you can save your progress and go back to it as well. You will be provided with a case number that you will need to log back in to finish if you are not able to do it all in one sitting. When you are doing the online application it will feel like you will never get done, they ask for a lot of information so be prepared to either sit for a long time or to do it a little bit at a time. You can also request or print out an application and send it by mail as well.
Once you completed the application, make sure you print out the verification forms and information they give you, keep that in your folder with all of your medical information. Now, it’s hurry up and wait. You won’t hear back right away, in fact, plan on at least 2-3 months or more before you hear anything from them, I didn’t get my rejection letter for almost 8 months after my initial filing but this was due to the social security office requesting more information as they will often do. This may be in the form of more paperwork to fill out or a request for an assessment of some sort. The paperwork I received in the mail was requesting more detailed information about my previous jobs as far as physical requirements of those jobs. When I filled that information out, I started with my very first job from 15 years prior, DON’T DO THAT.
Start with the most recent job and work backwards. I was also asked with the same paperwork to provide more information about my daily activities and how my condition was affecting these activities. I was also sent a letter with an appointment that they were requesting me to go to for a psychological assessment. I was told that sometimes the SS office will also request physical assessments as well. These assessments are usually done through a neutral medical professional as opposed to the doctor you have currently been seeing. In the mean time, you wait, and you wait, and oh yeah, you wait some more.
All in all, that’s about what the process was like for me. And as I said, after almost 8 months, I received a letter stating that they denied my request because I was not disabled according to “their rules.” You will be provided information on why your claim was denied as well as what you need to do to appeal the decision or to re-apply.
In looking back at my initial application, at the time I applied, I did not have a fibromyalgia diagnosis on my medical record; I now do as well as a note of probable chronic fatigue syndrome. That’s why in the beginning I said to make sure all your paperwork is as up to date as you have available as well as you should verify all of your current diagnoses with your doctor. Following my rejection letter, I sought the help of an attorney to appeal and my appeal has been filed.
So at this point, it’s more hurry up and wait. I think if I had to do it all over again, I may have gone the route of an attorney to begin with because most now do not charge a fee unless they win your claim and they do all of the legwork for you in putting together your paperwork, however I don’t know what they do about the initial online application but it would be worth a visit with a qualified disability attorney. However, I now have to decide that if I am rejected on the appeal, do I want to wait the 14 months before it can go before a judge or if I take the 2 strikes and move on or if I want to continue to pursue my claim.
In the US, or at least in Minnesota, it is a 12-14 month wait to move to the next step before a judge according to my attorney. If it goes before a judge to determine disability they will ask a lot of questions about your health history and how your condition/conditions affect your daily life. It sounds like a nerve wracking scenario but in the end, if it gets approved, it will all be worth it.
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So Now, How does one react to the “rejection letter?”
So many of us dealing with chronic illness have had to go through certain rejections along the way, rejection of belief from doctors, rejection of medications that do not help, and chronic “rejection” that the doctors don’t know what else they can do for us, so very many different ways to have been told the word “no.”
Now, probably the worst rejection of all of this whole situation is being told that even though you, your family, and/or your friends know you can no longer work, someone who holds your financial future in your hands has determined they “THEY” feel you are still capable of gainful employment. Not matter what, nothing that you put on paper can truly show what your day to day life is like. You have to rely on the information that your medical team provides to paint the picture of what your existence is.
Even though it should be perfectly clear, not all things are black and white. It can be very easy to give up at this point, to feel like you want to throw in the towel. Trust me; I’ve been there, back and forth many times. It is also very easy for someone on the outside to say, “hang in there, it’ll be ok, things will look up.”
But deep down, reading that rejection letter is a huge let down and it can lead to a lot of new stress. We worry about what we bring to the table to support our family and now that it’s gone, we feel guilt, stress, and sadness; we feel like a failure, we’ve let our family down.
Unfortunately there is no magic thing to make all of those feelings go away. From the beginning, those of us with this condition have become fighters; we are ultimately fighting for our lives. So in the midst of all of these “no’s”, “rejections” and emotional waterfalls, we need to remember that we are fighters who are fighting for the ultimate prize, ourselves.
We need to fight to be able to make as normal of a life for ourselves as we can. Yes, all those positive vibe comments like tomorrow is a new day, take it one day at a time, etc, even though they are annoying as hell and the last things we want to hear, those are truly the things we need to remember each day.
We are stronger than we know; we choose to get up every day and continue on with our lives as best as we can. We live whatever our condition allows each day, some days we live more than others but to truly start to deal with life with a chronic illness and deal with the rejection of disability support, we need to remember we are going through this process to help provide ourselves with as good of a life as we can have.
Keep fighting for yourself. Figure out a way that you can get to the positive place in your mind and keep pushing through and moving forward. Also remember there is a huge community of support out there who truly understands what you are going through. Most importantly, take time for yourself each day. Do something you are still capable of doing and enjoying. Take care of yourself so that there is still something to fight for. And if your family is supportive, lean on that support and love to get you through all of this disability process and ask for help if you need it.
Related: Tips to Apply and Win Disability(SSD) for Fibromyalgia and Chronic illness