My Personal Health Insurance Experience

September 20, 2009

I do not want to start a political argument here. I do not think that sort of

thing belongs here on our forum. I just want to share my personal story and get

it out there. If you have a personal story, I hope you might share it too

without getting political. This is a place for support. The following is

something I shared with my friends in hopes they might see how someone with CMT

is affected by trying to get health insurance.

I have a disability. My diagnosis is Charcot Marie Tooth Disease. I have just

had to leave my job, which I cannot do anymore, because of my physical

limitations. I have been looking for work, but I have limits because of muscle

weakness and tremors. CMT is a degenerative neuro-muscular disorder, which put

me on the declinable conditions list. This means that I cannot get I cannot get

individual health insurance. Trust me. I have explored it and I have a letter

sitting right here beside me, which details this fact. It is from Assurant

Health, with whom I supposedly can get insurance as an American Montessori

Society member. So don't tell me to try and go that route.

I would love to be able to take better care of myself and better manage my

condition by building a freelance career doing parent and teacher education

workshops and also continuing my music and theater career. No problem! Just get

on your husbands insurance. Right?

Wrong. Because of rising health care costs, my husband's employer just dropped

its group coverage. He is now on an individual policy. That happened just last

week. It couldn't have happened at a worse time.

I am on COBRA for now. Thank goodness. It is costing me more than 400 a month.

When that runs out, I will have to pay around 800 a month for coverage, which is

not even as good (but the best they offer), through the high risk pool.

This problem is causing a lot of stress for my family. I am not sleeping. The

financial fear that comes with losing my job has been compounded greatly by the

fear that I will someday not have any healthcare coverage. My husband does not

have the resources to support this family alone, nor does he have any resources

to get me health insurance.

Hopefully, I will get a job that has health insurance and accommodates my

special needs. Wish me luck. I hope I can find a job that allows me to help

people the same way I could in a freelance career helping parents and educators,

making music, and making art.

Recommended Posts