Invisible Disease – 2

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Invisible Disease – 2

About one year ago, I wrote my blog Invisible Disease, where I vented about how hard it was for me to file for disability.

It was a terrifying moment for me when my doctors explained the negative impact that continuing to live the lifestyle I was used to would have on me. It was time to stop and find the opportunity to rest and take care of my body daily.

COVID-19 has taught all of us how hard it is to change our habits. Scraping my professional life meant a significant financial withdraw for my family. On the other hand, it was a smaller impact than the high stakes of all lupus’ long-term irreversible symptoms.

With lupus, I learned through several disability claim denials that combining my doctors’ statements with the lupus medications were not enough to prove my condition. I have an invisible physical disability that neither the corporate world nor the social security administration could fully understand.

Filing for Long Term Disability

As I was going nowhere with my disability claim, I hired a couple of attorneys to help me move forward. That was another big step for me. To openly talk about something so painful and private is very hard. I felt like I was poking at all my open scars.

The lupus fatigue, mind fog, light sensitiveness, night fever, chronic pain, and rashes described by my doctors were insufficient to prove my diagnosis. I needed a stronger voice to show outsiders what I already knew.

That’s why lupus research and awareness campaigns are so relevant. We all need to make our voices heard. With more support from science, the acknowledgment and support of the government and local community will eventually increase.

Extra Help Pays Off

One of my attorneys has worked diligently to learn and explain my limitations. I had to go through more tests and get even more data from my doctors. As I said, explaining everything that I go through to my lawyer was very hard. Still, his role in this process has dramatically decreased my stress level. For him, my case is part of his daily business. For me, it is my life.

Under his guidance, after 18 long months, my claim took another turn.

It was once again denied, but he didn’t give up; we went through another round until the insurance company could not refuse the undeniable truth and asked for a settlement. He did it! We did it!

What Now?

You may ask me, how does it feel to win? I am not sure I feel like a winner. Proving to others that I have lupus does not make me feel like winning honestly. That said, a weight was lifted from my chest, finding justice gave me hope.

We all need to stand up for what we believe. It may be our health, our families, our lives.

Our voices are louder when we come together, and the BLM movement has proved it.

Let’s leverage social media to inspire and help other people living with lupus. Most importantly, let’s continue to ask for the support we need from our community and the federal government.

If you need a hand on how to explain what lupus is, check the lupus facts.

Let’s talk about the elephant in the room.

Yours truly,

Hope

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