Invisible Disease

It was surreal to hear my doctors explain the extent of the negative impact of continuing to live a highly stressful life without enough time to rest and take care of my body on a daily basis.

Leaving my career meant a big financial withdraw for my family, but the high stakes of continuing living as I was, and not listening to my body’s needs, meant starting a dangerous road that could affect my family even further in the future.

As with any other disability claim, medical evidence is a must, but for lupus, that may not be enough. If you have a physical disability, such as a broken leg, no one denies it. For lupus, even though my doctors were carefully documenting my symptoms, showing the endless list of medication and blood test results, my request for long-term disability was questioned and denied.

Snow Ball

Lupus for me has developed over time, and numerous symptoms have appeared and disappeared, depending on my lifestyle and stress level. That said, all the symptoms leave scars, physical and emotional. Having a community and a government that does not understand what lupus is and how it works, makes the whole journey even harder.

While there is no known cure for lupus, data has shown that medicines combined with positive lifestyle changes can help control the symptoms. In my case, I am treated with anti-inflammatory corticosteroids, immuno-suppressive and pain medications, but that is not enough to keep me functional and lupus controlled.

My doctors have also asked me to increase my amount of rest, avoid the sun, fluorescent and halogen lights, get regular low-impact exercise, eat a healthy diet, and to not drink alcohol. It’s a long list, that takes a lot of discipline to check all the boxes.

Filing for Long Term Disability

I was going nowhere running by myself with my disability claim, even with detailed medical notes. After months of frustration, my doctor recommended that I get an attorney to help me move forward with it. That was another big step for me.

It’s surprising that even though the most important part of a long-term disability claim for lupus is medical evidence, it was not enough. My severe symptoms of fatigue, mind fog, light sensitiveness, night fever, chronical pain, and rashes do not speak for themselves. My family knows my daily activities and social life have been limited, but how can I prove that to outsiders?

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

Getting Extra Help

I finally hired a specialized attorney to deal with my challenges and to handle my work-related conversations. Explaining everything that I go through to my lawyer was very hard, but 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, my claim has taken another spin; my doctors have been contacted and interviewed, and I had to perform other standard tests to validate my symptoms.

I am not sure how this process will end, nor if my claim will be accepted, but I feel that I had to fight. Not standing up for what I believe seemed like a defeat.

Let’s join forces, use social media to inspire and help people who are living with lupus, but most importantly, ask for the support we need from society.

Yours truly,

Hope

“You may not always have a comfortable life and you will not always be able to solve all of the world’s problems at once but don’t ever underestimate the importance you can have because history has shown us that courage can be contagious and hope can take on a life of its own.” – Michelle Obama