Accessing Disability for Migraines: A Logistical and Emotional Journey

Accessing Disability for Migraines: A Logistical and Emotional Journey

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.

Draining sick and vacation banks

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.

Qualifying for disability coverage

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.

Mountain of paperwork

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.

Fearing pain-free moments

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.

Hoping for health improvement

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.

Accepting a new reality

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.

Finding a new perspective

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?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (12)
  • KarenE
    2 years ago

    I’ve been on disability for nine years. My employer offered a 90-day, employee paid short-term disability plan at employee expense, after which an employer-paid long-term disability plan kicked in. The long-term plan paid 75% of my gross monthly income. I was allowed to remain on my employer’s medical/dental/vision insurance, so being on disability didn’t really affect our monthly bottom line.

    After nearly two years on long-term disability, I applied for Social Security disability and was approved within three weeks. When I received the call from my Social Security liaison, I couldn’t even speak because I was in a state of shock. I had heard so many horror stories about being denied, having to appeal numerous times, etc. My liaison said that I had such excellent documentation from my neurologist, my general practitioner, and from myself, that there was no way they could deny my claim. My physicians had documentation for several years prior to my filing. I completed my disability application online, and I wrote volumes about my migraines and how they affected my life. I left nothing out. I’m sure whoever had to read my file probably wondered if I was ever going to stop writing, but I was desperate. The migraines were getting progressively worse, and I was home more than I was at my full-time job.

    I also had a difficult time adjusting to being home. All my friends worked, and my husband was a workaholic, so I was alone most of the time. I got a dog after about three months and he was a wonderful companion, but I became a social hermit. My neurologist began experimenting with several different treatments to see if she could find something that would help the migraines, and that was a nightmare. Nearly all of them affected me adversely.

    The isolation, loneliness, and drug-induced fog led me into deep depression, but with medication and therapy I’ve gotten that under control. I make plans and like to be social, but more often than not, migraines cause me to cancel plans and appointments. My friends understand that I don’t just have ‘a headache’, but the rest of the world isn’t nearly as understanding. I think all migraineurs deal with that judgment. Unless someone has migraines, or has a loved one who suffers with them, they can’t empathize.

  • Holly Baddour moderator author
    2 years ago

    KarenE – Thank you so much for taking the time to share your story. It’s wonderful that you were able to secure benefits relatively easily. I’m glad you emphasized the importance of documentation. There’s really no such thing as over-documenting migraines in advance of seeking disability. Your case is a great example of this fact.

    Thank you also for opening up about the very real and difficult emotional realities involved in transitioning from working full time to suddenly being at home every day. It really can be a shock to the system.

    Some might think once they complete the sometimes tough emotional journey to secure disability, they’ll be all set – but in some ways, that’s just the beginning of another challenging journey. Thanks again for sharing your wisdom. – Holly Baddour (moderator/patient advocate – migraine.com)

  • CLSheridan
    2 years ago

    My life-long episodic migraines became chronic in 2010. By 2013 I had already taken one 90-day temporary disability leave, then was forced to leave my job permanently – after 19 years working as a legal assistant at the same firm. I applied for federal permanent disability in October 2014, which was declined. My appeal was filed in March 2016, and I was recently notified I have a hearing on my appeal in early February 2017. In California you can apply for temporary disability online without the assistance of an attorney, and manage your year-long benefits online. Once those benefits expire, you can then apply for the long-term Federal benefits, also online and, again, without an attorney. However, if you your application is denied, it’s advisable to hire a disability attorney for your appeal. I don’t know if the situation is similar in other states, but in California the long-term/Federal disability application process is a long one. I am fortunate to have a husband’s income to get us through these past few years, but it hasn’t been easy. The sudden elimination of my income drastically changed our lives and our future. That along with the exhorbitant co-pays for my medications was difficult to manage. On top of everything else, I was completely immobilized by the loss of my job, my coworkers, and the everyday human contact that comes with being part of the world. Isolation is one of the worst things that’s come of this illness, and it’s pals depression and anxiety were more than happy to join the party. Now I’m awaiting calls from my attorney so we can update my medical records with the additional anti-anxiety and depression meds, and notes from the therapist I’ve been seeing for two years (because “Sitting around, waiting to die” isn’t the proper response to, “Hey, what’s up?” – Who knew?) Don’t get me wrong, I’m thrilled to finally have the opportunity to go before an Administrative Law Judge to describe what remains of my life. But my medical records will include correspondence from my neurologist to my insurance company describing better progress than experienced because this is what it takes to get certain treatments increased. Those letters will not be helpful to my cause, but there is nothing I can do about it. So my fingers are crossed. For those of you preparing to take the steps, do not let the length of the journey discourage you. Just be aware the process CAN be lengthy.

  • Holly Baddour moderator author
    2 years ago

    CLSheridan – what an extraordinarily generous offering you just supplied to summarize your process for the benefit of others. Thank you so much for the level of detail and insight you provided. I, and others, I am sure, resonate with that sudden shock of isolation you describe when going from the workforce to being at home. Migraine is already such an isolating condition by its very nature, and the conditions of depression and anxiety are well documented comorbidities. Add the reality of being at home (instead of work) every day in pain, which substantially reduces interactions with others, and even someone without depression may struggle with low mood and loneliness.

    I must say when I initially stopped working, I experienced many months of great relief at not having to interact with anyone for I was so deeply exhausted and burnt out from giving more than I had. Eventually, though, I found I needed to create ways to get out in the world, in my own limited way, to ensure I was maintaining a healthy perspective.

    It sounds like you’ve done a phenomenal job of researching and mobilizing the resources necessary to move through this sometimes tedious, incredibly demanding (emotionally, physically, financially), and lengthy process. I’m glad you took the time to spell that out because it’s important for those who are considering this path to understand that we, as those pursuing disability, are the only ones who are pushing the process forward. At times it can feel like an unwieldy balancing act- a job in itself – to make it happen. So, just like with working, there might be days you don’t feel well enough to file this or that piece of paperwork, or attend an appointment that is key to an appeal. The difference is, there is an end in sight (though, as you mentioned, that end can be pushed out repeatedly with appeals).

    I hear you about fearing the repercussions of a doctor’s statement documenting improvement in one small area and its overall impact, but it sounds like you have mobilized a team of various doctors – so the hope is (of course) that the compelling nature (and history) of overall story will emerge.

    I will be thinking of you and hoping that the outcome is what you hope and need it to be. Thank you so much for sharing.

    Holly Baddour (moderator/patient advocate/author – migraine.com)

  • Tamara
    2 years ago

    This helped me as well even though I’m not anywhere near this point and part time work is good for me (and finally have hope that I won’t be with the med that actually helps – tramadol ER). I still am being severe guilt when I miss work appointments, and anytime I have to reschedule.

    The worse one and finally starting to understand is having to use charity and ask for money from my church. I have never been in that position and even when my mom was a single mom we were still able to give money and still get what we need. Have to understand I’m not taking money away from someone who needs it, it’s there for people like me who need a bit extra support. Same thing as disability – it’s there for you.

    Thanks

  • Holly Baddour moderator author
    2 years ago

    Tamara- excellent points. Guilt is a big factor, isn’t it? We feel guilty for missing work or even for canceling out on friends. And additionally, as you very astutely point out, there can be guilt for accessing a benefit (in this case disability) or if you have to ask for financial support or assistance from any source because migraines are impacting your ability to make ends meet.

    Guilt can cause stress. And as we all know, stress is a classic trigger for migraines. An ugly cycle and one that’s important for all of us to recognize and try to release.

    It’s such a vast and frequent topic, in fact, that migraine.com has many articles on the topic. I’d encourage you to peruse them if and when you have the time or interest:

    https://migraine.com/?s=guilt&submit=Go

    So glad you’ve found a med that’s working for you, by the way!

    Holly Baddour (patient advocate/moderator- migraine.com)

  • Jens
    2 years ago

    This sounds so much like my experience. After teaching for 18 years I finally had to accept that this had to be my new reality. As much as I loved teaching I am convinced that the job made my conditions worse. By the time I had to leave I was only working 2-3 days a week. At the end of the 1st semester I had worked less than a total of 9 weeks. We are still in the process with disability and it is terrifying.

  • Holly Baddour moderator author
    2 years ago

    My goodness- what a transition to leave a career after 18 years. It is a leap of faith, in some ways, because there’s no guarantee that the condition will improve. What we do know, by choosing to pursue disability, is that we can no longer proceed with the current untenable reality. And I can tell you, as someone who is “on the other side” , even still struggling with daily pain, is that by removing the daily stressor and guilt of not being able to show up to work and fully do my job, an enormous burden was lifted from my shoulders. That energy was then freed for self-care and love of others. Thank you for sharing, Jennifer Shuler. Thinking of you. – holly baddour (moderator/patient advocate- migraine.com)

  • cindyd
    2 years ago

    This is the best article I have read yet on this site…I am at that point of seriously considering disability. My life has become a sense if dread of going to work and dreading the upcoming work week and wondering how I am going to “make it through the week.” My husband is so supportive but the fear of losing a good job and being in limbo to receive approval. My life feels so burdensome with not being able to help provide for my family. I have a lump in my throat as I right this. I wanted to work until I was at least 62 and then do something fun for a job that interested me but that is probably not going to happen. Makes me sad. Thanks for a great article.

  • Holly Baddour moderator author
    2 years ago

    Hey cindyd- i’m really moved by your response to my article and am so glad it resonated with you. I remember so clearly the crossroads of which you speak. The image that was in my mind at the time I was considering leaving work was that of being on one of those old playground rides – a large circle you stand on with handles that spins round and round, made faster by kids running then leaping on as it goes at its dizzying pace. The sense I had was that the only way I could get off the crazy work ride was to injure myself and my family by leaping off into the dirt. How could I go from 100 miles an hour, far too fast for what my own body was telling me I could handle, to a face full of dirt in my mouth, skinned knees, and nowhere to go? It felt a terrifying choice to give up the way I had defined myself. But the alternative was untenable. I was giving every ounce of energy I had to my work and collapsing by the time I got home, such that I had nothing left to give my family at the end of the day or on weekends. I hear you saying your life feels burdensome at the thought of not being able to provide for your family, but the truth is, with a better handle on your health- you will likely be able to provide for them in a different way because you will have your wits and your heart with you in a way you can’t when you are so worn down from the combination of pain and overextending yourself. I also hear you on your life goal to work til you are 62, but isn’t there that saying that life is what happens while you’re making plans? Sometimes we have to take stock of what our body and situation is telling us and let go of what we’d thought was ahead. Having a supportive spouse is a huge plus. I can’t and would never dare tell you what choice to make here, but I might encourage you to consider at least a temporary disability leave option (if you have one) so you can test the waters a bit. Whatever you choose, please remember that migraine.com is a great resource and we are here to provide support and information whenever you need. Thinking of you- holly baddour (patient advocate/moderator)

  • SilverPhoenix13
    2 years ago

    I am currently considering applying for, at least, temporary disability. I feel like it may be necessary to take time away from work to, hopefully, get a handle on my migraines. I thought I had gotten them under control, but I was, sadly, mistaken.

  • Holly Baddour moderator author
    2 years ago

    SilverPhoenix13 – thank you so much for writing. Sometimes a temporary break can be a great perspective-giver in terms of next steps. You might learn that doing so helps you to reset, in a way – perhaps rejigger your treatment protocols, and give you time to prioritize self-care during that window. Sometimes it can help you see that more time is needed. Either way, I hope, if you pursue it, the process is expeditious and leads to relief for you. We are here for you should you need any more information or support. – holly baddour (patient advocate/moderator migraine.com)

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