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.

9 Comments on “Disability, Struggle, and Vindication

  1. I just read this post and have to say we are in the same shoes.

    I also am an RN at home struggling to accept the patient label at 30 years old. You are farther into this journey than me. I’m at 18 months and am also struggling on the disability front. It’s encouraging to hear that they approved yours.

    Last month I started IVIG and am due for my next round next week. I’m also currently having issues with bradycardia and tachycardia. No bradycardia until after the IVIG. I’m hoping it’s my body trying to figure out where earth is again.

    This journey of autoimmune autonomic neuropathy is definitely not for the faint of heart. Everyday I look back and try to figure out where my strength keeps coming from.

    Here’s to better days and most definitely congrats on your disability coming through.

  2. Sarah, that is an amazingly beautifully expressed recounting of your struggles. I am so sorry you’ve had to endure this, but to look for some bright side to this, you have gained insights that most people might take a lifetime to learn. I’m definitely not trying to diminish how much of an overall nightmare this has been and continues to be, but you have gained a lot of wisdom and you’ve been a real advocate for people who need it. Bravo to you, sweetheart. I’m hoping you keep making a difference and that you find solace in that.

  3. Honestly, I could have written most of this. I lost my RN job due to the sudden onset of a mysterious illness, which has since been identified. It took me a few years to get awarded SSDI and Medicare and once I did, life got easier because like you said, I could focus on managing my illness.

    Finally, working with a functional medicine doctor has gotten me to a better place. I still struggle significantly and am on disability, but I have been able to return to work (after 6 years of not working), to a nursing job where I can work a few days a month.

  4. Sarah,
    I had no idea you were going through this. I could only imagine dealing with a condition and having to deal with the stress of insurance companies and not receiving proper benefits. You are a survivor and I’m glad you shared your story. Someone needed to read this and will be stronger because of seeing how you overcame. God bless you and I’m sending prayers your way. Take care!

  5. I am so glad that you have gotten your disability. I understand your situation very well. I was hit by an autoimmune disorder when I was 50, and went from “60 to 0 mph” in very short order.

    I was lucky to get a quick diagnosis – a rarity in this space.

    Got LTD and after about a year, got Social Security. Just after my Social Security was approved my LTD insurer declared that I was able to go back to work full time. This resulted in a lawsuit, in which the claimant (me) had to prove that insurer was acting in bad faith. In other words, I had to prove not that I was disabled, but that they knew I was disabled, and said otherwise.

    Luckily, I eventually won the case, but it took several years. And it was always hanging there like a dark cloud over the picnic.

    Being a chronically ill patient is a full time job – caring for yourself, navigating the insurance system and doctor’s requirements. You’ll find Medicare is much easier to deal with. Sign up for a prescription drug plan in the next open enrollment period – that’s a big help too.

    Congrats on getting SS

  6. What treatment ended up working for you?
    Did you get the IVIG?

  7. What a shame our Government has allowed one so young to become so wise. Ok, maybe a “shame ” is not truly how I feel. Perhaps lucky is the word I’m looking for. Lucky to know this amazing young woman, personally. And though our relation is through marriage, it could be by blood with our common life lessons. We’ll done, Sarah, well done.

  8. Congrats Sarah, I know how it feels to finally get SS Disability. I have had multiple sclerosis for the last 30 years and managed to work as an RN up until 2001. Most of those years I did not know what was wrong, only that something was and that it was getting worse. Of course, after my diagnosis in 1997 I knew that all that was due to relapsing remitting MS and that I wasn’t crazy. Most of my career was in critical care and ER nursing. The last 7 years of 12 hour shifts almost did me in. I finally threw in the towel when I was having cognitive problems, weakness and fatigue so bad that I was becoming a danger to my patients and myself. I thought I would be able to get disability without much problem.

    Wrong. You have told the story of trying to navigate the system and of fighting Social Security. I too was turned down and had to get a lawyer . We were all set for a hearing and suddenly after 2 years of frustration, anger and depression I was granted full disability. It makes one think this is just a big game to them.

    It makes me sad to think of all the years I was part of the very health care system that turned on me and caused me so much heartache and pain. I believe I was a very good nurse and like many nurses sometimes went above and beyond for my patients and employers. Our healthcare system is painfully dysfunctional and I am not very hopeful that it will be fixed any time soon, if ever.

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