Disability: My doc says that all of her PBC... - PBC Foundation

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My doc says that all of her PBC patients had to go on disability. She has taken me out of work but it freaks me out. I'm only 43 and now have worries about my future finances, insurance, health care access, medication costs, and others. On the contrary, I was taking off work 2-4 days per month due to appointments, hospitalizations for esophageal bleeding, encephalopathy, GI issues, and fatigue. The encephalopathy was the straw that broke the camel'so back.

Are all of you on disability, too? If not, please give me insight on how to avoid it. If so, please give me insight on the financial aspect or resources that can help. How did you get insurance?

My daughter did post a "go fund me" page about me through her Facebook account. It was so sweet, she already raised $1,600. She's so cute, she wanted to raise enough money to pay for the house so we could prevent foreclosure.


Jessica D., Chesterfield, VA

8 Replies

I was diagnosed in March 2017. I’m 49. I still work full time but I have somewhat a flexible schedule. Itchy often, tired periodically, worried all the time but feel lucky to be active. I hope you are feeling ok and wish you good luck.

Jessica1975 in reply to Ottley3

Thank you.

I have had this now for about 5 years and still work full time and still itch at night and still function on about 4 to 5 hours of sleep. My doctor refuses to put in for disability and said sitting home would be no good for me. I also must carry health insurance, so if I don't work, I wont be able to go to Doctors anymore and get the help I need. I do buy my urso in Canada though, because my insurance will not pay for it.

Jessica1975 in reply to donna01

Thank you.

Hi Jessica! I am on disability, but not due to PBC, I have Lupus. If your dr. feels you should be on disability you should probably seriously think about it. As far as insurance you get medicare and usually a secondary insurance like well care for instance. This is what I get. They also help with rides to and from appointments. Meals can be brought to you if you can't cook, housecleaning services if you need it. and more. Believe it or not they do have many good services available. You'll learn all about these services once on disability. Btw, you'll get your insurance through disability. Feel free to ask any additional questions and I'll try and help as best as I can.

I applied for disability last year twice and got denied. Did you have a hire a lawyer or did you apply yourself

Morning...tough decisions to make for your future. My doctors never offered to write me out on disability for PBC. Are they talking long term or short term(state or employer) disability. Two totally different entities. Federal , like said above, is a long road filled with at least one automatic denial. Takes a really severe inability to do any type of work to get it. In the past, it was easier, but now, with so many filers, the wait time is about 17-24 months for a final decision. Plus, the Medicare only comes 2 years after the initial onset of disability is determined, and of course being granted the disability payments. Once on Medicare, if you do not want to pay for a secondary insurance, you can roll over to an HMO. If you are able to work, and can get there most of the time, perhaps your employer would consider some at home work some days and in office others. Better than losing a valuable worker. Hope that helps some.

Your daughter sounds like a treasure...you are truly blessed to have her as a cheerleader in your life

Even if a doctor writes disability form for you, it does not mean you will get approved by the disability benefit from the government or long term disability insurance. I have two doctors wrote disability forms for me. I got approved for the short term coverage but not the long term. It took 18 months to get the first hearing and still got denied... Waiting for the second appeal but I am not optimistic about it.

Best luck to you.

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