Personal Stories, Headlines & Helpful Information
By: Abigail Letts O’Brien
Patient Advocate, Living with MBC
I consider myself a relatively intelligent person. I mean, I struggle with understanding technology - Wi-Fi and networks, the cloud and whether I can text on plane mode. I also don’t have an Instagram account, and cannot figure out Twitter to save my life (pun intended).
However, I do have a bachelor’s degree, and I hold a master’s degree from an Ivy League institution. My husband is an AVP in marketing for a national insurance company.
English is our first language.
Yet we have never felt as clueless as when I was diagnosed with metastatic breast cancer in May 2018. The thing is, it wasn’t the disease that threw us for a loop. It was the paperwork.
My profession required me to spend approximately 50 percent of my time in a hospital setting. After my stage IV diagnosis, I attempted to maintain my full-time job. Yet I was consistently immuno-suppressed as a result of my medications, and medical facilities are a breeding ground for infection. My disease forced me to take a leave of absence from work, which extended into short-term and then eventually long-term disability.
The paperwork necessary to file for disability was an abomination; confusing; a trick. Do you recall those “fill-in-the-bubble” tests in school where the C answer was “Some of the Above” and the D answer was “None of the Above,” followed by the E answer which was “Sometimes A and B?” While the answers weren’t exactly presented this way, the questions were cryptically worded. It was as though the paperwork was meant to confuse the applicant in an effort to have him/her give up on filing a claim.
I am an English-speaking, highly-educated individual. The process of “going on disability,” opened my eyes. What happens to the individuals who don’t speak English, or English isn’t their native language? How about the dyslexic? Those who cannot read or read well? What happens to the people who are sick and debilitated from the disease they are fighting? Who helps them?
If you are a patient, start with your oncology nurse who can direct you to a social worker. These individuals can aid with the paperwork or connect you with someone who can. Call the helplines on the paperwork and ask for assistance over the phone or schedule an appointment in their offices.
My message, however, is really for the physicians, nurses, social workers and assistants in the oncology department: Don’t let us slip through the cracks and give up. Don’t let us suffer in financial ruin as we seek answers for insurance and disability claims. Find us patient navigators who can serve as translators, tell us who to call and then PROVIDE us with those phone numbers and additional means of contact. GIVE us the information we need and in the manner with which we need it.
In order to complete my application for disability, I needed to submit my entire medical record from the hospital, some 200 pages in length. My husband and I mailed at least two requests for the information to the medical records department. Even after numerous weeks, there was no response. It wasn’t until I personally marched into the hospital records department that I received my medical documents. How fortunate that I live four miles away, own a car and can speak English.
Patients - be LOUD. Demand what you need.
Medical staff - Listen. Please.
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