Voices Across America

Pain Patient Spending Years Trying to Get on Disability


State: Tennessee
Congressional District: TN02


Chronic Pain, Mental Health, Neurological Disease

Issues and Challenges

Serena has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Mental Health Access, Rare / Underserved Disease, Abuse (Mental, Physical, Elder), Disability, Financial Assistance, Gaslighting, Invisible Illness, Social Security Disability, Suicide / Self-harm, Transparency in Health Care

My Story

Hi there, my name is Serena and I'm 28 years old. I currently live in Tennessee in the United States.

I have been suffering from the two most painful conditions in the world for two years now. I have been diagnosed with Trigeminal Neuralgia and Complex Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy. CRPS/RSD is ranked the most painful condition on the McGill Pain Index, and Trigeminal Neuralgia comes in second.

I am not eligible for ANY assistance programs or indigent care in my area. I also cannot work at all, so I don't have an income. I have been denied by TennCare (medicaid) four times, as well as my appeal, and can't get any insurance whatsoever. My family cannot afford it. I have also been denied by Social Security three times and have a hearing in January. The Tennessee court system assigned me the worst and harshest disability judge they possibly could have, on top of that. She has only approved 35 out of 259 disability cases, which is an astonishing 14%.

My first disability attorney also completely ruined my chances of getting Social Security benefits and did not submit any of my lengthy medical history to them. He will be receiving a lot of my disability money, too, if I get approved. I have also been horribly gaslit and mistreated at multiple medical facilities in my area, to the point that it is malpractice.

My family and I are at our wit's end. We don't know what to do. I can't get any help! The past two years of my life have been an absolute nightmare. My dad is selling off his cars and other prized possessions just so we can pay our bills. He is on family leave from his job to help take care of me. He has been for months and is not making any money. I am severely disabled to the point that I can't take care of myself. I can't stand on my feet for more than five minutes at a time and sometimes have to be in a wheelchair.

CRPS is a progressive disease and only gets worse. It is also known as the "suicide disease." I have been in the ER at least four times for suicidal ideation since since I came down with these illnesses. When I was abused at my local ER by nurses and a doctor on duty, they not only made me walk on my feet without a mobility aid, they also threatened to send me to a state mental institution.

We desperately need some resources and ideas as to what we can possibly do and what my next steps could be. There have obviously been some pretty horrible things going on here and we would really, really appreciate any help that anyone can give to us. We keep running into roadblocks with the healthcare system.

My most severe condition, CRPS, is represented by a documentary on Netflix currently and is about a girl named Maya Kowalski who went through a lot of the same things and mistreatment that I have. The documentary is called "Take Care of Maya."

Thank you, all, for reading my story. The healthcare system is broken and something needs to be done about it.

Serena H.

My Motivation and Inspiration

I turn to music, art, and spirituality during my harder times while battling trigeminal neuralgia and CRPS. I am an internationally ranked flute player and have won two gold star prizes from an international competition based in London, UK. One of these prizes was at the highest performance difficulty.

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