Sick and Tired of Being Sick and Tired

Strategies and alternatives for coping with fibromyalgia, bipolar disorder and other chronic illnesses

Working with Chronic Illness: Mixed Blessings

Posted by wendyburnett on April 3, 2010


ChronicBabe’s next blog carnival is about working with chronic illnesses, and the subject sounded interesting, so I thought I’d do a post on it. A few of my online friends with chronic illnesses have mentioned that they wish they were able to work because they miss some of the things that go along with having a job. Things like social contact, getting out of the house on a regular basis, feeling like you’re contributing something, and especially the paycheck.

I, on the other hand, have a job I hate (and that makes my illnesses worse) because if hubby and I don’t both work, we can’t afford to eat. (Eating is good. I know this because for a while neither one of us had a job, and eating didn’t happen nearly as often as I would have liked.) I actually applied for disability, but to get it, you have to be able to wait them out while you DON’T work. After 6 months of denials and being hungry I realized that if I tried to wait for a judicial hearing (the average wait time in my state is 2.5 to 3 YEARS) I wouldn’t NEED disability because I’d be dead.

Yes, there are some advantages to working. I get a (tiny) check every week, it forces me to get out of the house and get some exercise, and I get to talk to people besides hubby and the roommates (although most of them are folks I don’t like and wouldn’t spend time with if I had a choice.)

On the other hand, those few advantages are trumped by huge disadvantages.

Environmental stressors:

  • There’s no personal control of the environment
  • It’s always either too hot or too cold
  • We have glaring fluorescent lighting
  • There are constant, high levels of noise (with frequent bouts of timers going off and beeping until someone has a chance to turn them off – ugggghhhhh)
  • Exposure to perfumes and cleaning products that can cause cause allergic reactions, asthma attacks, or sinus issues

Physical stressors:

  • Standing for hours
  • Constant repetitive motions
  • Lifting and moving heavy items (up to 30 pounds or so)
  • Handling foods that are kept at temperatures barely above freezing
  • Ending every night with wet feet (not so bad in warm weather, but walking home with wet feet when the temperature is below freezing is NOT pleasant.)
  • In addition, even though we’re SUPPOSED to get a break, it’s rare for me to have the opportunity to actually TAKE one. They never schedule more than one person in the deli at the time, so to take a break, I have to get whoever’s working in the bakery to cover for me. Easier said than done, though, because the woman that usually works the same shift I do gets pissed if I take a break. (She’s actually told me a few times that, “you’d better hurry, I have work to do,” like covering deli when I have to go to the bathroom or take a break isn’t part of her job. That also brings up not being able to get away long enough to go to the bathroom or get a drink if my water bottle gets empty.)
  • Oh, and lets not forget not ever being able to get enough sleep because there aren’t enough hours in the day to work AND do all the things I need to do at home

Emotional stressors:

  • Rude people (not the customers, I’ve only had ONE of them be hateful in the six months I’ve worked there.)
  • Constant complaints because I can’t be in two places at once (excuse me, I’d LOVE to be able to put out stock and do markdowns, but I can’t be out on the floor doing that while I have customers who need to be waited on.)
  • Even more complaints about not clocking out at 9 pm when I’m scheduled to leave because I can’t break down the second slicer and clean it, or take the garbage out, or do the floors until after I close (and I’m not allowed to close until 9pm.)
  • Knowing, every day, that I’m going to get bitched at when I get to work because of whatever I didn’t have time to do the day before
  • Knowing, every day, that by the time I get home I’m going to be in intense pain
  • Worrying about when the unreasonable demands and constant complaints are going to push me into losing my temper and cussing someone out

I’ve had six different jobs since my fibromyalgia was diagnosed 14 years ago, ranging from fast food through sitting at a computer all day, and with every one of them the disadvantages outweighed the advantages. I guess the best one was the corporate job. At least with that one I made enough money to actually live on AND afford medical care; and sitting at a desk all day is much less physically stressful than standing, lifting, and carrying; but if I had the option I would definitely quit working for someone else.

I’m currently trying to come up with a way to make a living that actually works with my issues AND provides enough income to at least be reasonably comfortable, but for the time being, I’m stuck with what I’m doing. I don’t like it, it makes my symptoms worse, and it doesn’t pay enough for us to do more than barely scrape by; but at least we get to eat . . .

**If you are reading this post anywhere other than wendyburnett.wordpress.com it is because it has been stolen. Please click on the link provided to return to the site of origin.

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13 Responses to “Working with Chronic Illness: Mixed Blessings”

  1. sami Alam said

    wow… feeling wondered to the rich balancing your lines…
    really enjoyed the post…

    Outstanding…

    visit mine…& plz plz plz post your comments…

    Thank you…

    i’ll be in touch….

  2. […] Working with Chronic Illness: Mixed Blessings « Sick and Tired of … […]

    • yeah, insurance is affordable if you buy it “before you get a chronic illness” – the problem is, as soon as you start making a lot of claims, the insurance company will increase your premiums until you’re priced out of the market, OR they’ll just cancel your policy. Want to know how health care reform will really work? Check out this article: http://www.chronicbabe.com/articles/829/

  3. lissyvz said

    I hear you. It is such a precarious balance.

    • It is indeed, both precarious, and a balancing act. And there’s another emotional stressor for the list: Worrying about when you just won’t be able to do it any more.

  4. I’ve only ever seen it happen once and it was a long time ago, but a client of mine once got disability while still working. It may have helped her case that she was having psychotic episodes in the office and hiding under her desk, but she got it. The attorney was Jeffrey Flynn in Atlanta. He’s moved away, but his sister Kathleen still maintains a practice doing nothing but Social Security in Decatur.

    @say no: If health insurance is so affordable, how come so many people can’t afford it? Take your spam somewhere else, please.

    • Having psychotic episodes at work. Well, at least that’s ONE thing that hasn’t happened to me (yet.) Considering the stress levels, it’s not out of the realm of possibility.

  5. Wendy, I’m so sorry: I forgot to address the actual topic! Gah!

    I haven’t had a job job in a while, but I can address self-employment while chronic.

    Advantages:
    (1) More control over your schedule than a regular job. You have a much greater capacity to pace yourself. Need a rest day in the middle of the week? You can build that into your schedule. Need a 3-hour lunch for rest or daily medical maintenance-type stuff? Ditto.
    (2) More control over your environment than a regular job.
    (3) May get you out of the house, depending.
    (4) More structure to your days, weeks than not working at all.
    (5) Social contact outside the immediate household is sort of guaranteed, depending upon your work.
    (6) Some income–sometimes quite a lot.
    (7) While in most settings, sleeping on the job is a dismissable offense, I can (and do) close and lock my office door every single day for a power nap or to meditate, and that makes all the difference in the world in my energy level going forward into the afternoons and evenings.
    (8) You feel like a contributing member of society, and of your household. Unfortunate that’s society’s definition of contributing, but there it is.
    (9) Prevents brain rot.
    (10) Breaks whenever you need them. And as often as you need them.

    Disadvantages:
    (1) You still have commitments which must be honored, whether you feel like it or not–appointments to keep, deadlines to meet.
    (2) If you rent office space, you still may not have the kind of control over your environment (temperature, lighting, etc.) that you really need.
    (3) Overhead goes right on, whether you work or not. Income, on the other hand, is entirely dependent on whether you are able to suit up and show up on a given day.
    (4) And if you are out of commission too often, you lose clients and get a rep as unreliable.

    The biggest single advantage of self-employment, in my opinion, is that you have the choice to surround yourself with co-workers who “get” disability. And the freedom to educate those who do not–or blow them off if they refuse to wise up, because they don’t have any power over you. As to your clientele, they are self-selecting: While some may discriminate against you, there are always plenty who will not.

    But it’s a privilege thing. Not everybody has the educational background, which is more often than not a matter of luck–a function of race and class and gender–to be able to choose a form of self-employment that isn’t in and of itself disabling. It’s also a matter of the nature of one’s disability–if you have certain cognitive symptoms at a certain level of intensity, for example, even a sedentary occupation can be out of reach. I realize I’m blessed to have the option.

    • Ginny,

      Thanks for this, it’s good information to have.

      Those cognitive issues are part of what got me out of the corporate job . . . There were days that I couldn’t remember how to do things I’d been doing every day for years, and other days that trying to figure out why the computer program wasn’t doing what it was supposed to be doing was simply impossible. Oh, and lets not forget falling asleep in the middle of doing something. Some afternoons the only way to stay awake was to stand up at the computer.

      One of the few “benefits” to not having access to healthcare is that the cognitive issues aren’t exacerbated by the side effects of the meds I was taking.

  6. Anon said

    I defintly agree with you. Working is better than not working. Have you thought of taking a job where you have mixed duties? Ive had admin ones that are all over the office. You can walk around.

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