Here are 10 unspoken rules to be followed by myself and others who are “lucky” enough to be on disability pension. Please note I am not venting about my people, see disclaimer!
- My day, any concerns or problems, symptoms, appointments, don’t matter, because I don’t work. So, no complaining, cuz I don’t work like my family and friends. They work, they matter, they can have a bad day. I can’t have a bad day, cuz I’m so lucky .
- Since I’m lounging around at home all day, the house should be fully stocked with groceries, personal items, menu planned and meal on the table at 5:45. Dishes clean. House clean. That’s ok, cuz I have all the time in the world, since you know, I don’t work.
- Budgeting, banking, paying bills, making the phone calls, pets and vets, running the house, fighting with Rogers, etc. all mine cuz … I don’t work.
- We’re broke, can’t pay off our debt, or do fun things. My income was cut in half because I don’t work. So my family suffers and it is all my fault.
- I don’t miss very much of the workplace I left, but I really liked the non-physical parts of my job, especially those times when I got to use my brain and my skills. I liked being good at my job. Accomplishing something. I liked many of the students, and I really miss some of them. Occasionally, it was nice having colleagues to talk with. So, mixed feelings are inevitable.
- Smile, don’t be a downer talking about my problems or how I feel or how much pain I’m in. I shouldn’t feel bad or sad or mad, because I don’t work. Nobody likes a whiner (real person with real problems).
- If I do have a good day, I try to keep it to myself so I don’t upset my friends and family who worked that day. So the only acceptable comment on how my day was, is “fine”.
- Remember to be positive and grateful everyday. I am so lucky that I don’t work and instead spend the day, in perfect health, feeling just groovy, lying on the couch eating chocolates and watching soaps. I’m pretty sure that’s what people believe. First of all, it was a major fight to get approved for long-term disability, lots of hurdles to jump. Medical documentation from several physicians was required. Then an independent clinic had to assess me for the insurance company for 8 weeks to offer up their opinion. ( Just in case all my doctors are lying.) Only after 3 of their own professionals assessed me as unable to return to work, was my claim approved. So, remember that people are not working and on disability for a reason. A very well-documented and verified, long lasting, permanent reason. So for myself, and many others, many days we feel like complete crap. In pain. Sick to our stomachs with digestive problems and medication side effects. Tired from side effects and illness itself. No money to do things or buy things. Regular monthly appointments with several medical professionals. Then to the pharmacy. Don’t be late for pickup time! And how does it feel to be off work on disability? Must be nice, right? It feels like shit. I feel broke, bored, unworthy, less than, boring, unnecessary, redundant, sorry for myself, terribly worried about the future, always worried about money and how I’ve ruined everyone’s life. And I don’t watch soaps, or any TV for that matter; during the day, only at night with my family.
- Try to be a good sport when people offer their unsolicited opinions about your illness and the easy way they know about to eradicate all traces of poor health. Early on, I was brave (naive) and shared my diagnosis with a coworker who I thought was a friend. She then told me “Oh, my stepmother had that. It’s a mental thing. I believe it’s all in the mind,” and “My aunt had that, but then she found the baby she gave up for adoption, and all her symptoms went away. It was all in her mind.” That was so incredibly ignorant and hurtful! I learned to keep it to myself, like a dirty, shameful secret. Not to mention, the whole have you tried? line of questioning. I am intelligent, well-read and up to date on all my health issues, you better believe I’ve tried it, the sensible and the outright wacko solutions. I’ve spend hundreds, probably thousands of dollars on different treatments. There is no cure, it is a disease that you manage through medical care, self-care, nutrition, exercise, medication, meditation and whatever else you can afford. Each individual person has their own best comprehensive treatment plan. Oh and of course, one most keep a sunny, positive attitude!! Always! Good good vibrations shooting off me like laser beams of lunacy. Do not even get me started with the Law of Attraction…..I did not bring this on myself, thank you very much. Om.
- Physical and mental health are intertwined. The guilt and shame, the worry and the uncertainty can be overwhelming and make all the physical symptoms feel worse.
Don’t be jealous of people on disability. You don’t want to trade places, trust me.
* Disclaimer: This all sounds really negative, and it is not a balanced view, but that’s how I feel some days. It’s real. Life is not one eternal ray of sunshine. If it sounds like my friends and family are horrible, they aren’t. My family is supportive. My friends are too. These are not direct quotes (except for the coworker, that happened as quoted,) but thoughts and feelings that I have, and paranoid assumptions.. Also, I’m including stories that other patients have shared with me.