Disability, Struggle, and Vindication
In the bleak winter that is life with a chronic illness, it is hard to remember that there is, in fact, a spring. The snow begins to melt, and flowers do actually bloom.
Good things can actually happen in the midst of a struggle.
And I have known a great struggle over the past three and a half years. I became sick very suddenly just weeks before my twenty sixth birthday and went downhill fast.
I struggled with finding doctors who took me seriously and being misdiagnosed and prescribed the wrong drugs. I was told I was, “being highly over tested” and asked, “Did your boyfriend break up with you?”
I struggled for a year and half, a short time for most patients like me, to get a diagnosis. Once diagnosed, I’ve struggled through a treatment option that leaves me very sick for a week or more each month.
I’ve fought with my health insurance company to cover the expensive testing and treatment. Denials of coverage, appeals, phone calls, dead ends.
I’ve fought for two and a half years with the insurance company that held my Long Term Disability plan. They made mistakes and I paid the price—both monetarily and emotionally.
I fought for three years for social security disability. Medical records, appeals, paperwork, pleas to doctors to answer questions. Lawyers.
I sold my car to pay my medical bills because I was denied disability benefits. I spent my savings and moved into my parents house.
I watched years go by as my friends got married and had babies and bought houses and got promotions. And I laid in bed. Too sick to fight a system that was set up to work against me.
Don’t get me wrong, I understand that many people have it worse than me. My struggle is just one drop in a sea of struggles.
I experienced so much heartbreak and loss, after almost four years, I really needed a win.
And finally, it came. I was recently granted social security disability benefits. It took three years and it was a struggle every step of the way.
Every lawyer refused my case because it was too complicated. In reality, they didn’t want to take my case because it would take them too long read my medical records and come to a conclusion. They wouldn’t get paid enough at the end of the day to make it worth their while. Every lawyer refused my case, except for one. He toiled over thousands of pages of medical records and case files. He spent hours that he will never be compensated for to structure my final appeal. The appeal that recently went before a federal judge.
The brief he wrote was so perfect, the judge granted me benefits after reading it without me even appearing in his courtroom.
Finally someone heard me.
My life was changed with the proverbial swing of his gavel.
On top of the financial assistance, I now qualify for Medicare and can receive health insurance benefits at a fraction of the cost I pay now for private insurance.
But what I did not expect when granted disability was how much it would change my perspective. It happened very slowly, and yet suddenly, my life changed. I feel a little lighter—like I’m out of the pressure cooker that is medical bills and a dwindling bank account balance.
I feel like I got a little independence back—something I lost early on in my illness but tried to cling to as if it hadn’t already slipped through my fingers.
And this may be my pride talking, but I feel validated. Vindicated. I feel like I can breathe. That the system I was fighting didn’t fail me in the end.
Finally, all the energy I used fighting for disability can be put toward my true enemy, my illness.
I hope that those of you out there that are working towards getting disability will be encouraged by my story. Keep fighting. It is not over yet.
We have a long road ahead. We have to look back and acknowledge the flaws in our system and then, without cynicism, work to plug the holes and repair the broken edges.
And for the first time in four years, I think we can do it.