Some of us who have chronic and / or especially debilitating migraines come to a point where we find ourselves with no choice but to apply for Social Security disability benefits. Applying and getting our application approved is no easy feat. Many, too many, people apply and are denied at least once and, in the end, aren’t approved for disability benefits until they hire a lawyer to assist them.
There doesn’t seem to be any logic to the approval process. I’ve seen people be approved fairly quickly and on their first try, but I’ve seen other people with very similar cases take years to be approved for benefits. I’ve know people who would have been fine financially if their application had been approved within six months to a year lose their homes and have to file bankruptcy because it took them years and the assistance of an attorney to be awarded benefits. Then, to add insult to injury, since they weren’t able to prevail without an attorney, they had to pay a significant percentage of any retroactive benefits they received to the attorney.
It would seem logical that by the time people go through this horrific process, they’d feel a great sense of relief and be happy about the outcome. It would also seem logical to be vindicated that finally their invisible, yet very real suffering has been validated to some degree. I’ve been following an online discussion started by a woman who was recently notified that her application had been approved. She commented that it felt “weird” to be “happy” about being disabled. Having had similar discussions with quite a few migraineurs over the years, I wasn’t at all surprised by that comment.
A few years ago, a migraine patient who had applied for Social Security disability benefits called me to say she had good news. The news was that her application had finally been approved. She told me how relieved she was that she wouldn’t have to be so worried about family finances, then she burst into tears. She was crying because until that notification arrived, it hasn’t fully hit her that she is indeed disabled. She’s an intelligent, vibrant woman who had been forced to leave her career because she simply wasn’t able to work, but that “official” notification made it real that she is disabled.
So, along with feelings of relief, happiness, and validation, being approved for disability benefits can trigger feelings of sadness and grief. It makes sense too because in a way, these migraineurs are mourning the loss of their “normal” lives and perhaps their “normal” selves. They may even experience a grieving process.
Dr. Dawn Buse, Director of Behavioral Medicine for the Montefiore Headache Center, offered some insight:
“The application process for Social Security disability benefits is often an exhausting process in terms of emotions, time and cost. Therefore, it is logical to assume that after being awarded benefits, someone would feel relief, accomplishment or happiness; however, the actual experience can be a mix of strong emotions including both relief and happiness on the one hand and sadness, loss, and grief on the other hand. For many people, their career or role in the workplace is a primary source of identify. While work can bring frustration and challenges, it can also be a source of pride, accomplishment, and purpose. The transition of changing from an employed professional to someone “on occupational disability” may leave feelings of grief about not being able to do the work that someone feels passion for, spent years in school learning or spent years of his or her life working toward. He or she may also feel sad, guilty or embarrassed for not contributing financially towards their family in the same way that they used to.”
“It is important to be aware that this transition may be accompanied by feelings of loss. It is vital to allow oneself to experience these feelings and grieve the loss of their former identity (if these are feelings that are brought up by this transition.) Some important things to keep in mind are that these feelings are common and they will likely subside with time. Some ways to help ease this loss are to remember the other important pieces of your identity. Are you a parent, grandparent, sister, son, friend, volunteer, mentor? This transition may also open up opportunities to expand parts of your life that you did not have the time or energy for previously including starting or continuing a favorite hobby, taking a class or learning something new, or becoming involved in patient advocacy or support groups. Ultimately, this is the time to focus on the opportunities that this new phase of life will bring. Remember that ambivalent feelings are common with this transition, but if you find that feelings of sadness, grief, guilt or embarrassment continue longer or interfere with your quality or outlook on life, reach out to a psychologist who can help you through this time. (To find a psychologist or mental health provider see the resources page on my web site.)”
Interview with Dawn Buse, PhD. May 20, 2015.
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Teri Robert is a leading patient educator and advocate and the author of Living Well with Migraine Disease and Headaches. A co-founder of the Alliance for Headache Disorders Advocacy and the American Headache and Migraine Association, she received the National Headache Foundation’s Patient Partners Award and a Distinguished Service Award from the American Headache Society. Teri can be found on her website, and blog, Facebook, Twitter, StumbleUpon, Pinterest, LinkedIn, and Google+.