Tuesday, July 7, 2015

Sarah Beth, RN: Disability, Struggle, and Vindication

Sarah Beth Cowherd, a young woman dealing with what she describes as 'an alphabet soup' of diagnosis -  Chronic inflammatory demylenating polyneuropathy (CIDP) and Autoimmune Autonomic Neuropathy (known as autoimmune ganglionopathy) - and author of the blog Sarah Beth, RN has written a powerful post in which she offers a realistic yet inspirational look at her road to diagnosis and receiving appropriate disability reimbursement. Does anything in her post sound familiar? I'll bet it does. Check it out:

In the bleak winter that is life with a chronic illness, it is hard to remember that there is, in fact, a spring. The snow begins to melt, and flowers do actually bloom.
Good things can actually happen in the midst of a struggle.
And I have known a great struggle over the past three and a half years. I became sick very suddenly just weeks before my twenty sixth birthday and went downhill fast.
I struggled with finding doctors who took me seriously and being misdiagnosed and prescribed the wrong drugs. I was told I was, “being highly over tested” and asked, “Did your boyfriend break up with you?”
I struggled for a year and half, a short time for most patients like me, to get a diagnosis. Once diagnosed, I’ve struggled through a treatment option that leaves me very sick for a week or more each month.
I’ve fought with my health insurance company to cover the expensive testing and treatment. Denials of coverage, appeals, phone calls, dead ends.
I’ve fought for two and a half years with the insurance company that held my Long Term Disability plan. They made mistakes and I paid the price—both monetarily and emotionally.
I fought for three years for social security disability. Medical records, appeals, paperwork, pleas to doctors to answer questions. Lawyers. Continue reading here.


mcspires said...

It is a sad state of affairs when we have to fight hard battles, not with the disease, but just to get proper treatment and assistance. :(

I am so happy she has won the war!

Heda said...

It's really good that she got disability and a renewed sense of independence. Particularly important for someone of her age. The next big step will be to accept her illness as part of herself rather than an enemy but that takes most of us, including me, years to do.