I believe there are two ways to handle challenges – you can focus on the bad, and grumble, complain and sulk – or you can chose to see the good that can come out of it, and do something about it.

I recently applied for short term disability coverage for the time I was off work recently due to my flare up of residual symptoms from GBS. Unfortunately, that disability claim was denied. I really shouldn’t be that surprised, as most people don’t even know what GBS is, let alone understand the effects of it. I am more disappointed that they didn’t try to learn about GBS or request more information from me, they simply denied the claim. I’m sure they hoped I would just let it go. However I will not, and I will be appealing their decision. It’s not about the money whatsoever, its the fact that those of us that have had GBS suffer with long lasting effects from it, and we have every right to access disability coverage.

Most people who have had GBS suffer from some sort of residual, whether mild or severe. Many of us have to miss work due to these residuals, some have had to modify their work hours, change careers, or even completely stop working. Too many people with GBS (and even other disorders) are denied disability coverage because of the lack of understanding and knowledge of the disease. The residuals may not be obvious to others, but they DO create severe limitations, as I experienced myself last month. My hope is that every GBS survivor would fight back on declined claims, but not everyone has the energy for that. However we need to educate others so there is that better understanding, which is exactly why I am appealing.

I understand that GBS is considered “rare” because it only affects about 0.001 % of the population. But rare does NOT mean that it doesn’t exist. And just because someone may not understand it, and just because patients recover and may not be in a wheelchair anymore, doesn’t mean the residuals symptoms are not happening. This disease attacks our nerves, paralyzing our bodies for weeks, months, even years. Our bodies and our nervous systems are changed forever. It shouldn’t be that hard to understand that we would deal with some sort of lingering affects from it.

I’m used to people staring back at me with a blank look on their face, when I tell them I had a disease called GBS, because they’ve never heard of it before. I’m used to my family doctor asking ME questions about GBS, because I know much more about it then he does. I’m used to getting a look of complete shock from health professionals, when I tell them I had GBS, because its probably the first time they’ve come in contact with it since reading about it in their textbooks. However I never thought that I would be declined disability coverage, when my residuals that I deal with are the exact definition of how they define a disability.

While being denied a disability claim by an insurance company is frustrating, I chose to look at it as a great opportunity to educate them on my disease. My disease may be rare; it may not be all that understood, but it is REAL, and I will stand up for it, for myself, and for others. Spreading awareness on rare illnesses is the only way to create a more accepting and understanding world of what it is that we go through. And for that reason, I will never stop sharing my journey with this disease.