Accessing Disability for Migraines – a logistical and emotional journey.
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It was through a mandatory HR seminar at work that I first learned about short and long-term disability options. I remember leaving the meeting in shock. I couldn’t believe there were benefits that seemed designed to support someone like me. I didn’t know anyone who was disabled and I didn’t think of myself as disabled.  I had my own misconceptions and ignorance about the conditions that disability covered. I thought someone would have to have a broken back, or be wheelchair-bound or something else that was obviously and constantly challenging. It didn’t occur to me that an invisible illness, such as migraine, could be covered.  I had no idea that migraines are the sixth leading cause of disability worldwide.

Meanwhile, however, chronic migraines had drained my sick and vacation banks at work; I couldn’t make it through a week without missing at least two days. When I was there, I hardly ever made it through a full day. I vomited nearly every day at work. The only reason I hadn’t been fired was because of my understanding supervisor.

I did some more research and learned that the first step in the process was to discuss the condition with my migraine specialist to see if he thought I might qualify for disability coverage. Everything I read told me that it is key to have the full support of your physician. Ideally, a migraine specialist with whom you’ve had a long doctor-patient relationship.   It’s even better to have the supplementary (and complimentary) support of your general practitioner. This is because your doctors have to fill out multiple forms to outline your condition and present your case.  So, in advance of my next appointment with my migraine specialist, I wrote a long statement outlining what the last couple of years of my life looked and felt like. I described an average week. I had a good long-term relationship with this physician. And, because my pain was so unmanageable at the time, I was having monthly appointments with him at the time, so I knew nothing I wrote would be new to him. However, I felt the need to write it all out because my level of emotion on the topic was so high that I knew I wouldn’t be able to get through the topic without sobbing.

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With the full support of my migraine specialist and my general practitioner, the process of stopping working and officially becoming disabled was relatively straightforward. There was of course a mountain of paperwork involved. I went from short-term to long-term disability through my employer.  After two years of coverage by my employer’s disability insurance, I was required (by the policy) to apply for federal social security disability. That process was actually led by an attorney hired by my employer’s insurer, because of course they wanted help footing the ‘bill.’  I was approved after an appeal of the initial denial. I gather that many people are initially denied, but sticking with the appeals process can be successful.  I included in my appeal a letter that my husband wrote in which he artfully detailed my struggles and how my condition impacts our family life.

For those first few months I was on disability, I lived in fear. I felt I was being watched by my insurer, and I was sure I would be caught in a pain-free moment perhaps running an errand.  My migraine specialist was encouraging me to take walks whenever I could, but what if someone from my old job saw me out walking? Did I really deserve to have access to these benefits? If I wasn’t in pain 24/7, could they force me to return to work?  That monthly, if small, disability check can lead to a weird and unhealthy feeling that it’s your “job” to be in pain.

Though the process of finding a sense of peace about not working has been a long and winding road, I am utterly grateful to have the weight and stress of full time employment lifted from my shoulders. My biggest hope and belief was that by stopping my full-time, stress-filled job, my migraines would dissipate – lessening both in severity and frequency. Unfortunately, this did not occur.

What did happen for me, and what seems to happen for many others, is that at some random point in the painful process of letting go of our former selves, there comes a gentle and welcome release and relief. We no longer compare our output to the productivity of others. We create a new definition of what it means to be productive. We stop looking backward and focusing on all we’ve lost and all that migraines have taken.  We find acceptance.  Not in a depressing, heavy-hearted manner, but rather in a more matter-of-fact “this-is-my-reality” kind of way. And perhaps out of necessity, we start looking forward. We plan life according to what we can do and focus on what migraines still allow.

It took me five years of being on disability to own the fact that I am worthy of disability benefits. Like others who are disabled with other more visible conditions, I have to approach everyday things differently than those who are well. I plan the day differently. Limitations lurk around every corner. But in those differences and challenges, I have discovered the ability to throw windows of perspective wide open.  Those windows, perhaps inaccessible to others who are able-bodied, enable us to see a different and beautiful view of life.  One where we understand and appreciate tasks like showering and driving, visiting with friends, enjoying the full-throated laugh of a friend, being spontaneous.  So on days when we are able to manage any of those things, we fulfill those tasks with so much more joy than someone who has never struggled to complete such a thing.

The process of accessing disability varies in every state. Many employers do not provide disability insurance. Those who do have widely varying processes for applying. Regardless, if you are feeling that continuing to work isn’t possible, it might be time to do some research to see what options are available to you.

Have you ever considered applying for disability for your migraines? Are you on disability for migraines? If so, are there lessons you could pass along to others?

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