This is quite a long post for me and it’s me blowing off steam and venting about something that frustrates and upsets me. Do not respond telling me not to be frustrated, that it’s just people doing their due diligence because there are people who try to cheat the system, or that it’s something small so I shouldn’t waste time and energy being upset. That is not what I need right now. I’m sharing this because it’s something I knew nothing about before I got sick and I think people ought to understand what people like me go through to receive our disability benefits. I also am sharing it in case anyone else goes through this and wishes that she could read about someone else who just wants to set fire to all the forms and paperwork that insurance companies generate.

Finances

I don’t normally talk a lot about finances. It’s just something I’ve always been somewhat private about even since before I got sick. However, having cancer for multiple years changes things. Sometimes I think about what I would be earning if I had stayed on my career path, even without any raises or promotions, and compare that to what I “earn” now. Admittedly, that can be depressing and I know that it doesn’t serve a purpose, other than to sometimes remind me that it’s not my fault that we’re on a tighter budget. I didn’t choose to have cancer. I didn’t choose to have it return and metastasize. I didn’t choose to need treatments that made it impossible for me to work. I didn’t choose for my company to decide that because I had been on long-term disability for a year they were going to send me an email from a stranger I’d never met saying I was “terminated” eight days before they sent the email. That means that even if/when I get my miracle, I don’t have a job to return to, so I can’t just decide “hey, I’m feeling good, I’ll immediately start working full time again!” It was perfectly legal for them to fire me. I think it was immoral, but it was perfectly legal and I’m sure that it made business sense to save the few dollars it cost to maintain an employee file for me.

I had been doing some freelance work for a company I loved writing stories about animals that always made me smile. Through circumstances that are nobody’s fault (seriously, no anger toward this company, I have only good feelings toward them), that work is coming to an end so for the first time since my cancer hit I don’t have actual real paid work. Given that American society is so focused on identity and self-worth coming from our work, and how often people ask “oh, on your new treatment can you work full time?” it’s a really weird place to be, even disregarding the money.

Disability “Benefits”

Speaking of money, I get Social Security Disability Income (SSDI) from the government. If you have an issue with that please do me the kindness of not saying a damn thing here. Also, please do our society the kindness of seriously thinking about why you have a problem with that and whether you can be more compassionate toward people who need SSDI. Lest you think getting SSDI is an easy process, I applied because I had to in order to continue receiving my private long-term disability insurance benefits (LTD) that I had earned at my last full-time job. The application was long, involved a lot of questions, phone calls, telling them exactly how much I earn freelancing and how many hours a month I spent freelancing, sending medical records, and even literally answering the question of what the expected end result of my diagnosis is (in case you’re wondering, I wrote “death” because I’m nothing if not honest on these forms).

I mentioned that I get LTD in addition to the SSDI. Now, to be clear, these together do not come close to equaling what I made before I got sick. I think the last time I did the math they equaled about what  I made in my first year out of college. However, they are what enable Jarrod and me to, keeping to a careful budget, pay our mortgage and student loans on time every single month while still giving a small amount to those who are more in need. We give a lot less to our church than we used to, but we still give something and we still always buy a Street Sense from the vendors because we believe strongly in helping others. Regardless of our drop in income, we know there are plenty of others in our very community who have far less than we do. I often feel guilty for not giving more. I have enjoyed so many advantages and privileges. I was supposed to be able to use those to help others much more than I currently do. Again, I know some people would think it’s irresponsible of us to give money to others at this point in our financial life. If any of you fall into that category, kindly keep your mouth shut and contemplate the meaning of compassion.

Every so often Guardian, my LTD company, sends me forms wanting me to update them on my condition. They also send forms to my doctor. I have literally had nightmares about my doctor confusing me with some other patient, saying I could work full time, and me suddenly losing my benefits. The forms are usually long and always make me feel like they’re just looking for some reason to deny me the benefits I earned. I received a new batch of forms yesterday. They’re nine pages, double-sided, and they want me to attach additional pages on top of that. I’m supposed to fill out these forms and answer all their questions by hand because, in order to receive what I earned, I need to jump through their hoops. Their hoops are bullshit, if you’ll pardon my language.

Forms Designed to Frustrate

The latest forms also came with a cover letter that explained that, as of November 2018 benefits will be changing. Previously the plan provided benefits so long as a person was unable to perform the duties of their regular occupation on a full-time basis due to sickness or injury. Now, it’s that after 24 months (which I’m far past) “you must be unable to perform the duties of any occupation for which you are suited by education, training, or experience.” There is a subtle difference there and a whole lot of wiggle room for Guardian to decide that I could perform the duties of some occupation on some basis and therefore they could cut off my benefits.

First of all, the forms are poorly designed. It’s like they showed them to a non-website user experience professional, wrote down all of her recommendations, and then did the exact opposite. So there are lots of questions that are poorly formatted so that one is frustrated even before reading the actual questions. The questions last time were annoying enough (and they require me to answer them again), but there are new, more annoying questions this time around! They would like me to, in about an inch of space each, describe my:

• “condition after [my] impairment began,”
• “condition before [my] impairment began,”
• “appearance, personal hygiene and grooming,”
• the clothes I typically wear,
• my height
• my current weight
• “usual weight” (for which I’m tempted to write “after three years of cancer this phrase is meaningless and cannot be answered” because that would be the honest answer)
• How I spend a typical day
• My hobbies and interests and how much time I spend on them now, as well as how much time I spent on them before my impairment began
• My relationships with others, if I have close friends, if I get along with people, “please give examples”
• How I respond in social situations, if I go out in public, if I require someone to go with me, how I communicate with others whether via visits, telephone, or email “Please describe and give examples”
• And more

Plus, then there’s a fun chart where I’m supposed to check which activities I do and how often, with the choices being several times a day, daily, weekly, monthly, or never – apparently they don’t expect people do things every few months or “rarely.” The chart also wants me to list my hobbies in about an inch of space broken up by tiny boxes, and my exercises “type/duration” in less than an inch of space broken into tiny boxes, and lumps “email, internet, games,” and “business” all together under “works on computer” because the amount of concentration and coherency required to browse Pinterest is totally the same amount it takes to do “business” in their minds.

To make it even more absurd, and obvious that this is simply a tactic to try to trip people up and find reasons to deny benefits, they repeat some of the questions. They also want me to fill out by hand information about my past jobs for 15 years – in addition to attaching a resume. Because I’m sure the job I held when I was 19 (I think I might have tutored a grade school kid in Latin that I no longer remember) is relevant today.

Powerless

The most frustrating part of these forms is how powerless they make me feel. I’m pretty sure that my height and femme humanoid appearance has no bearing on whether or not I can work full time as a content analyst or writer/editor. However, if I want to keep receiving the benefits that I earned, I have to provide my height and describe my appearance.

I’m not entirely sure what they mean by my “condition” but I guess an honest answer about my “condition” before I was diagnosed would be “Happily confident in my career path and trajectory, certain that I would continue to achieve success both in terms of meaningful and decent-paying work as I lived a long, and happy life where I could soon afford to easily travel and support the arts while volunteering regularly at my county animal shelter and donating to those in need,” and “struggling with anxiety, trying to find meaning and purpose in my most-likely shortened life, hoping for a miracle, and grateful for my community, pain meds, and kind medical personnel” for my current condition. Somehow I feel like, though those answers are honest, they might not be what whoever wrote these ridiculous forms intended to receive as answers.

In the Meantime

I’ll answer the questions as accurately and honestly as I can because I have to. I may have earned this benefit, but I have no power to argue about changes to the program or why they need me to describe my appearance (Is there some Disability Beauty Pageant they want to force people into?). My only power is to hope that the people in power at Guardian start to have more compassionate hearts and decide that making people describe their appearance and list how often they “shower/bathe” isn’t something they should do. In the meantime, I’ll answer the questions, send back the forms, and hope that they don’t decide that because somewhere in the world a job might exist that they think I could do, but that doesn’t actually exist near me and want to hire me, that I don’t get benfits. Hopefully they don’t decide that they dislike one of my answers and therefore cancel my benefits.

I fucking hate being powerless.