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.
Hi, I understand your frustrations dealing with STD. I am a nurse myself and had only seen GBS once in my career, many professionals never do. I thinking seeing it and reading about it in a textbook ( as you mentioned) leaves a different impression. I was diagnosed in March 2018 and have tried to find literature which describes the post- acute phase and have been unsuccessful. Can you help? You mentioned above the residual symptoms and I am interested in reading more about it. My residual is fatigue, which comes in waves, sometimes so exhausting that I have to nap for several hours. I never know from one day to the next. Thanks in advance for any insights you can provide!
I hope you keep it going on holly .I have the same. Looks from people when ask what’s wrong with me . I know.
I was denied first time but I appealed and was granted disability the second time but I also have other health conditions like conversion disorder which I got after GBS.
You Rock Hollyyy !!! #Strength
Although I am sorry you are going through this, it’s so nice to have someone who understands what I have gone through and what I am still going through. I was denied transfer to acute rehab five times before my insurance company approved it. They told my mom that I didn’t have enough of a medical need. I was on a ventilator and a feeding tube at the time. I am currently fighting an eye surgeon who fixed my drooping eyelid post GBS because he never submitted a claim to my insurance company, because he said the surgery was cosmetic and not medically necessary (This doctor has a contract with my insurance company and is contractually obligated to submit all claims to the insurance company who should be the ones to determine medical necessity). I am only about a year and a half post diagnosis, and I’m already tired of battling doctors and insurance companies. Most people do not understand life post GBS. I’m so glad that you do.
Sorry for the spelling. I was typing this up pretty fast between classes!
So sorry to hear of your denial.. Unlike u I was already on disability when I got struck with GBS.. I totally understand what your saying about residual symptoms..I have been getting them alot..I have other issues as well health wise so it makes some days unbearable..I really hope you appeal this decision and get what you righteously deserve.. Isnt this why we pay for insurance??
My mother got this disease back in 1989. She was very sick before we were told what she had. Drs didnt know what was wrong with her. She went into the hospital walking. Not walking coming home. We found out what she had when she went into a coma and they did a spinal tap. She never really got better. She passed away in 1996. Then my dad got it in 2000. The drs said they both got it from the flu shot they received when we were in Germany in the 80’s
I am so sorry about your loss. That is so crazy they both had it 🙁
I am so glad I stumbled across your page! I have had GBS also. Mine was not as server as yours. I never had to be hospitalized. Mine was explained as having bilateral GBS, it affected my left side more than my right. I also have residuals that are so hard to explain, but you have describe it perfectly. I have been fighting GBS since July 10, 2011. It seems the more I try to exercise the more flares I have. Thank you for your blog! I completely understand the pain and frustration with GBS. The best of wishes for you!
Hello Holly, You have my permission to add me to your list of names for dealing with GBS. If I can help in any way let me know. I will speak up. I will educate. I will share. I too get the blank stares from PT’s and physicians when I bring it up. One PT student said to me, “oh you had muscle weakness with GBS?” That is what her textbook told her. She didn’t have a clue. Anyone could ask my husband as well about what I went through. He knows almost as well as I do. Keep fighting and if you need a supporter…you just contact me.
Thank you Melissa! Where do you live ?