A woman nervously looks over her shoulder.

The Emotional Turmoil and Fallout of Fighting to Regain Disability Coverage

Holly was recently kicked off her private disability plan. After a year, she won back coverage. In this series, she walks us through the various steps she took and what it was like to navigate this experience.

The year-long experience of appealing the decision to discontinue my disability coverage was grueling and has caused ongoing stress and upset.

How did my migraine react to my victory?

When I told friends and family I had won the case, all of them said – “oh you have to celebrate- have a wonderful time enjoying this win.” Of course, instead, the day after learning I’d won, I got hit with a terrible letdown migraine and spent four days sick in bed. Perhaps that was a strange celebration enough - to be able to feel sick knowing that I wouldn’t also have to move in with family and change my life due to lack of coverage.

What were my fears throughout the appeal process?

The haunting reality that I would not be able to make ends meet without coverage continues to hang over my head. During the appeal process, fears constantly appeared asking me to consider what I would do if I lost the case. Would I have to leave the house I just moved into? Would I have to live with family? Would I be forced to return to work and struggle to manage frequent nausea and vomiting which forced me to stop working in the first place? These fears and questions did not abate after winning the appeal and continue to haunt me.

Why am I constantly looking over my shoulder?

Now that I have regained coverage, I still am working through the upset of the experience. After having been surveilled unbeknownst to me, I now look over my shoulder constantly. I know in my heart that migraine is an invisible disease that can’t be evaluated through surveillance, but I also now know this is a tactic that insurers use and rely on for justification of coverage removal.

While I’m relieved to have coverage again, I am now jaded by the entire process. I’ve heard horror stories of people who go through this process with a private insurer, just to get coverage reinstated – and then find out months later that SSDI is removing benefits.

What has this process taught me?

The two positive outcomes that came out of this experience are major for me. First, living through serious financial strain and barely making ends meet for the year I was off coverage taught me a lot. I learned how to live more frugally but moreover, I grew in deep compassion for the large numbers of people who struggle financially every day. The perspective I gained from struggling financially was life-changing.

Second, I have come to appreciate the coverage I receive in a way I couldn’t before. After a decade of receiving this support, I likely became less thoughtful about the assistance I was receiving. I am now filled with gratitude and relief each time I see my benefits come through.

Will I recover from this tough year?

I do believe the adage “time heals all” applies here. The extreme stress caused me to lose weight I didn’t have to lose. I’m working to rebuild my strength and wellness now. With time and distance from the stress and trauma this experience caused, I will eventually begin to feel calmer.

Have you ever lived through the fear or reality of losing your disability coverage? We’d love to hear about your experience and how it has continued to impact you. Please share your experiences in the comment section below so that we can learn from you.

Featured Forum

View all responses caret icon

By providing your email address, you are agreeing to our privacy policy.

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.

Join the conversation

Please read our rules before commenting.