Tuesday, April 8, 2014

Working & Chronic Illness #HAWMC

Today's challenge: Off to #work! What #advice would you give to those on the job search? How do you juggle your job and a chronic illness? Any tips for the interview? #HAWMC http://hub.am/1dBSR2Y

First, let me mention that I am still learning about how to properly do this, so I may have some details wrong. Feel free to correct me in the comments & I'll update here.

Work and Chronic Illness
First, let's clarify that work with a chronic illness is different than work and disability, mainly because of the rules and regulations having to do with disability itself. Either way, trying to work while ill all the time is difficult at best. We must remember that he rules of rest and relaxation don't apply to us like they do for other people. We must take extra time and precaution to guard our sleep and down time. It's not that we need it to feel better (which we do), it's that we require it to keep from making ourselves worse. We're already sick! Most people when they're sick have the luxury of saying, "if I rest up, I'll feel better..." If we rest up, we don't feel any better, but we hopefully don't feel worse. It's not always that simple of an equation (rest isn't guarenteed to be restful).

DO NOT TRY TO TOUGH THINGS OUT! I know this sounds silly as working while chronically ill is already toughing things out. What I mean is, if you're chronically ill and working, don't just ignore your symptoms thinking they'll go away. Symptoms are our bodies messengers, alerting us to what is going on within us. The message isn't always clear, and it isn't always proportional to what's going on (small symptoms can mean big problems and big symptoms can mean small problems). Regardless, they're all we've got. And if you're already driving a car with bad breaks, you don't try to race around like Evil Keneval. Be careful, and be in close communication with your doctor when your body is communicating to you. Your doctor is your pit crew to keep you in the races. If you let them know that staying fit for work is your goal, they will happily work with you to help make you a success.

Work and Disability
There are two categories in working while disabled that we first need to address: is your disability VISIBLE or is your disability INVISIBLE? This makes a huge difference, especially if an employer must pay to have your disability accommodated for you to be able to work for them. I know NOTHING about dealing with a visable disability. However, there are many non-profit and government agencies who are willing to help. You can find those organizations by searching through Social security's Ticket To Work website, and you don't even have to be on Social Security Disability to receive help. Many of these organizations can help you apply for disability if need be. I just know the Ticket To Work search engine is a good place to start looking!

For the majority of us (over 90%!!), our disability will be invisible, meaning no one can tell we're sick by looking at us. Oh, we may have loads of strange behaviors that give us away, but for the most part, you'd never know we're sick. There are advantages and disadvantages to this. The biggest advantage is your employer never has to know. Most places in the United States are called "At Will" states, meaning that even given anti-discrimination laws for disability, you can be fired or let go from a company for almost any reason. You can try to battle it in court, but don't count on it. The working world's philosophy is: find another job.

The general rule is: Don't Ask, Don't Tell... Which can be frightening because it can seem like it means carrying around a secret. Here's how I like to think of it-- according to statistics, half of all adults live with a chronic illness! You're not alone or even a minority! So this kind of information---that we live with a chronic illness---falls into the Big, Golden Box of None of Their Business. The bottom line is, if you can manage your symptoms, you should be fine. If your symptoms are unmanaged and interfere with your ability to work, talk to your doctor. If your symptoms are as managed as they get, but they're still giving you trouble, talk to your local disability organization as mentioned above. (I'm going to a seminar later this month and will have more to report then, so watch for part 2 of this post!)

Working and Benefits
This information is for SSDI only. If you get one check a month for disability from Social Security, that's SSDI. If you get two checks, one is SSDI and the other is SSI. The rules for SSI are not covered here.

If this is your first time attempting to work since becoming disabled, there's good news. Social Security will allow you to earn as much money as you like and still receive benefits in what's known as a Trial Work Period, for up to nine months over five years (the nine months do not need to be consecutive). So if I work three months in 2010, two months in 2011, and four months total in 2013, I have "used up" my trial work period, and the rules for earning money change. This is, of course, assuming the money I'm earning is considered "Substantial Gainful Activity." That means one of two things: either I'm working the hours and duties that would be considered full time employment at minimum wage, or I'm earning more than $1070/month as a non-blind person (the rules for sight-disabled persons are different too).

IMPORTANT!!! Be sure to take out EXTRA money from your paycheck for TAXES!! Most people don't have to pay taxes while on SSDI, but the combined income of your SSDI and your Trial Work income will likely bump you up in a tax bracket, meaning you will OWE on your taxes! When you fill out your W-2, make sure you have them take out extra money from each paycheck to cover your disability income too. YMMV! How much you need to take out will depend on how much you make, but it can be as high as $133/week that you'll need to take out in addition to normal taxes. This is especially important if you find you cannot work after the Trial Work Period. You may find yourself trying to pay an employed person's taxes on a disabled person's income, and that's not pretty!!

There are a whole bunch of rules for what happens after your Trial Work Period is over, so I encourage you to read Social Security's Red Book and attend one of the many seminars available through VocRehab and other organizations on working while disabled. But basically it boils down to this--- you cannot charge less money for the work you do, if someone who was healthy would be paid more: you must "charge" equal pay for equal work. You cannot earn more than $1070/month if you want to keep receiving your SSDI check. So take $1070 and divide that by however much you made hourly during your Trial Work Period, and that's the maximum hours you can work per month and not lose your SSDI.

For me, that number is too small to make me employable except by someone who understood exactly why I have that limitation---which means revealing I'm on disability. This is why I'm currently working with one of these organizations to see what I can do. Because I don't make enough money to afford rent, foot and medicine, and rents have jumped here so fast, it's not worth it to downsize to a smaller place. I'd be paying more! So I have got to figure out some way to accommodate my uncontrollable symptoms while making enough money to afford my living situation, while not making so much that I lose my benefits (because I'm not getting healthier!).

I looked into the PASS program, and that's a plan that must be PRE-approved by Social Security, and it's a plan to come off of benefits ENTIRELY. I'm not ready to let go of my security blanket... Not while they keep diagnosing me with new stuff! For other folks, know that it's tough to get approval.

That's all for now... Look for Part 2 in a few weeks!

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