Short term

I went out on medical leave at the end of October. I communicated with my work team, with our HR department, and with my short term disability company. I explained the situation and that my return date would be an estimate. I spoke with the three doctors who primarily manage me prior to calling about STD so that they would expect the paperwork. I get in home nursing care and have frequent medical appointments and testing. I am frequently observed by providers and, for once, I looked sick. I was so demonstrably sick that I was not concerned that my disability would be denied.

Ten days after I filed for disability, I received a call from my STD carrier. They informed me that they were denying my claim because they had not received any information to support that I was sick and couldn’t work. Initially, they said they had contacted my providers and that the providers said I was fully able to work. I knew this wasn’t true, especially because I had sent in office notes along with my STD form directly to the carrier. The company then said that the providers said I was unable to work and verifiably sick but because they did not know the exact date for returning to work, the STD was denied. We had no idea how long it would take me to get back to baseline and my STD company had refused to approve it without a firm date.

Without approval of STD, I would have lost my job and health insurance unless I immediately returned to work. Of course that was impossible. I was so afraid that I would lose my insurance that I had a panic attack while on the phone with my insurance company. This triggered a bad mast cell reaction. The company eventually found the office notes sent over and agreed to approve disability for four weeks from that day.

Naturally, I was not ready to return to work by the date my insurance arbitrarily set. I called two weeks before this date to notify them of this fact. I had appointments with my providers who both agreed that I was not well enough to work. We agreed on a tentative return date in early January.

Despite the significant notice and providers who sent in required paperwork, my company once again denied my STD claim. This went on for weeks. Last Thursday, I received a phone call telling me that my claim was denied from early December on because my providers “said I had no ongoing health problems and there is no reason [I] can’t work”. After weeks of phone calls from myself and providers, filling out paperwork, sending clinical assessments and office notes, my insurance company was still insistent not only that I was too sick to work but that I had NEVER been sick at all. This is the same company that covered me after I had surgery so my previous approval for surgery secondary to mast cell disease was known.

Friday night, after a day of frantic phone calls and emails, I received a message that my STD was approved through late January based upon information that had been received weeks ago.

In the time I have been fighting for short term disability, I have slept for upwards of 20 hours a day most days; developed bruising over most of my body; experienced weakness and numbness in my extremities due to vascular inflammation; developed blistering hives; had a daily fever, sometimes quite high; had daily awful night sweats; had a major flare of orthostatic symptoms such that I would pass out upon standing up; had awful headaches and difficulty thinking; developed gastroparesis, making eating and retaining the food very difficult; had abdominal and rectal pain so badly that I sometimes vomited from the pain; and vomited every day, usually multiple times, from gastroparesis, pain, and mast cell disease. Throughout this process, I have continued to receive documented, ongoing care to manage these verifiable conditions. I am currently attached to an IV line for sixteen hours a day with IV push meds throughout the day. I take 20 meds regularly, including multiple daily doses of IV, oral, and rectal meds.

A huge part of the struggle of being sick is having to convince hostile parties of this fact. I am terrified every single day that I will lose my insurance and job because an insurance company has decided that I am just not sick enough despite significant evidence to the contrary. I am tired of having to fight every single day to demonstrate that I am sick and that fight making me sicker. I am so tired of having to beg for things that I need to stay alive.