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Disability Benefits: Lost & Won

Although migraine is the 7th leading cause of disability, there is not a lot of information about how to attain coverage and even less about what to do when or if those benefits are taken away. As someone who has been through this difficult and emotional journey, I’d like to share this 7-part comprehensive guide which provides useful information on the legal, financial, logistical, and emotional challenges that can arise when coverage is lost and concrete tools to win it back.
- For those still employed and whose migraine condition is making full-time work an impossibility, take a look at this piece that explains the difference between private disability plans (long and short-term plans) and Social Security Disability:
- Preparing for an independent doctor visit:
- Getting surveilled by a private investigator:
- Exploring your options after losing coverage:
- Getting a cognitive neuropsychology evaluation:
- Winning a disability appeal:
- The emotional turmoil of appealing a disability rejection:
Have you applied for disability and been denied? Have you been on disability and lost coverage? If so, did you win it back?
Please join the conversation below and let us know what you’ve learned through the intersection of migraine and disability. We look forward to learning from you.

  1. Great resources Holly!

    1. Thank you, Annzie. Your kindness and support means so much to me. How are you faring? Always interested in hearing about you. With love, Holly ( team).

  2. hey great work on this article i like it thank you for this information it is very helpful for me nice.

    1. Thank you for your kind words. The more we know the better we will be able to manage our disease!
      How are you doing today?? Nancy Harris Bonk, Patient Leader/Moderator Team Member

  3. This is exactly the path I went through for my chronic migraines about 2 years ago. And I completely agree that it is a full time job itself to 'prove' the disability is warranted. As I type I can feel my migraine coming on, as working on a computer is a trigger for me. But I thought it would be helpful to provide some feedback.
    Where I differ is after getting both SSDI and LTD from my former employer. After first getting STD then LTD benefits through my prior employer, this past January they called and wanted to make a settlement on my claim. It would absolve me from having to 'prove' my disability and still get a benefit, albeit a smaller one.
    After much number crunching and deliberation I made the choice to take the settlement, by getting monthly payments via an annuity and not a lump sum to avoid a large tax implication.
    I may have lost some monetary benefit, but not having to stress as much every month (another migraine trigger I am sure I share with a lot of you ) to fight for benefits was worth the price in my opinion at this point in my life.
    Wishing everyone all the best .

    1. Thank you for sharing your experience with us. It's a full time job being a chronically ill person, an exhausting one at that.
      I'm glad things worked out for you. I'm on SSDI and understand the frustrating that goes along with applying for it.
      I hope this migraine attack resolves asap and hope you can rest up. Pain free wishes heading your way, Nancy Harris Bonk, Patient Leader/Moderator Team Member

    2. Hi there- thank you so much for sharing some of your journey with us. Several community members wrote in following these individual articles to share how they made similar choices to yours- choosing a payout vs. the longer-term payment. Their reasoning was in alignment with yours. The decrease in overall payment was worth being done with the power imbalance and endless stress that comes with having these people looking over our shoulders and asking us to prove our disabilities. I'd not heard of the option to get monthly payments via an annuity so I appreciate you offering that as an option for our community members who are facing this situation. Most helpful to hear about that.
      And, as someone who "won" back coverage (and wasn't given the option of a payout), I continue to feel the awful sense of stress related to being tied to these companies. Thank you so much for articulating this important part of the puzzle. Glad you're with us! Warmly - Holly - team

  4. Had I not asked about an alternative to a lump sum, I would likely not have got that information from the LTD insurance company. They referred me to a financial rep. they coordinate with as it is out of their scope to handle such types of payouts. The gentleman was very reputable and experienced. I recommend him if someone wants to go this route. I don't have his name handy but I can share privately if someone wants to reach out to me.

    1. Oh- that is fascinating. For sure I'd never heard of this option. I'd assumed you'd consulted with your own accountant about this so that's helpful to hear you went through the company to get this option. You are kind to offer yourself as a resource on this for those who are interested in learning more. Thank you so very much. Warmly - Holly - team

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