Can I be fired for having a chronic illness?
Employees in the United States are generally offered nine paid sick days a year. Obviously, if you have a chronic illness and a full time, in-office job, that’s probably not going to being enough sick days by a long shot. Do you have protection against discrimination and surprises? Sure. The Americans with Disabilities Act forces employers to make adjustments for disabled workers, usually with time off. The Family and Medical Leave Act gives you up to twelve weeks off without pay each year for medical emergencies.
But your chronic illness probably isn’t an emergency. I get it. Life is tough with a chronic illness, but it’s your life now. So, cry a little, suck it up, and start planning a more successful life with your disease. If you know you have a chronic illness, then be preventative by not surprising your employer by suddenly taking twelve weeks off with no notice of your disease. Don’t leave your company hanging by a thread because you never took the time to prepare your co-workers or employer for your absence. Your disease is your responsibility now and you can choose to build an infrastructure to support it or you can deal with the consequences when things begin to fall apart.
How to Organize Your Life When Your Illness is a Full-Time Job
These days, my plate is very full. I’ve even had to turn down clients for work. I keep asking myself, why is it that I’m always short on time and energy? What do I do all day that is keeping me so busy and distracted? I sometimes forget that my disease is a full-time job. I have cardiac rehab three times a week, the infusion center on Tuesday, and the standing doctor’s appointment on Thursday. If there are any little gaps in my calendar, you’ll find me face down on my desk trying to figure out how to squeeze in a nap between press releases. The consequences of missing work because of a flare-up are real. If I don’t work, I won’t get paid, which means I can’t pay for rent, car insurance, or groceries. If I don’t take care of my disease by going to cardiac rehab, getting my IVs on schedule, or taking my medicine, I’ll get sick, be hospitalized, and lose all the freedoms and privileges of my normal life.
In high school and college, you might be able to get your classes and teachers to work with you, but the real world has no 504 plan and you’ve got to learn to maximize your energy to earn money, sustain relationships, and organize your life. I find myself in enough hospital rooms and unintentional napping scenarios that I wouldn’t rush to call myself an expert on a perfect life with chronic illness, but I’ve got a few tricks up my sleeve I can share. Having my own schedule, guidelines, and privileges means that I can work around my illness—from the hospital bed and home. There are millions of other people who also work like this. Here are some tips on how to balance a chronic illness with a busy life and work schedule.
Work from Home
Telecommuting is the way to go. This is what they invented Skype for. Let your employer know that you’re struggling to concentrate at the office and that you feel the quality of your work would improve if you were able to work from home during periods of illness. Let them know you have reliable internet and phone access and will be able to carry on your current projects with constant communication with the rest of the staff via phone and email.
Prevent Flare-ups
Prevention of flare-ups is less time-consuming than having them constantly. With chronic illness, the more run down you become, the harder it is to manage your daily life. It’s important to do everything possible to stop a symptom before it starts. For example, you might consider ways to prevent joint pain by investing in a cart to help you carry heavy groceries and ease the physical burden. If you have a gastrointestinal disorder, you may want to keep “safe” foods in the pantry, just so you can always have the option of making a reasonable meal choice.
Don’t Take It Too Seriously
If you miss an event or you’re too tired to do something, don’t beat yourself up over it. There’s always another day. There’s always tomorrow. You fail a class? That’s life. You’ll do better next semester.
Have a Few Irons in the Fire
At some point, we all fall. When we do, it’s a good idea to not need to rely on a single project, job, or paycheck. Working from home gives you the opportunity to manage multiple opportunities. Find a way to manage them.
Keep an Agenda
If I don’t write down an appointment in my calendar, I will forget about it. I’ve completely missed out on important events when I forgot to write them down in my calendar. Chronic illness has a way of compromising plans. I tend to try and fit in a nap or relaxation/down time whenever there’s a gap in my calendar. The worst is waking up from a nap to realize you forgot a conference call.
Save for a Monsoon
Forget a rainy day! With a chronic illness, you never know when you’re going to be down for the count. Start putting away part of every paycheck into savings. Live beneath your means. Try to always have an emergency fund for those crappy weeks when you just can’t do it.
Securing Accommodations at Work
If you already have a job that you don’t want to leave, you can talk to your employer about making adjustments for your illness so you can continue working. Some possible accommodations might include:
Being able to take more breaks
Working part-time from home
Being allowed to choose your own hours, or cut back on your hours
Moving to a better office for your condition (more/less cold air, fewer stairs, one with a couch where you can rest, etc.)
Being able to make up hours when you have a doctor’s appointment during work hours
Being able to Skype-in to important meetings instead of traveling to meet clients
Don’t be afraid to think outside the box. You need to do what you have to do. If that means buying an air mattress and setting it up in your office so you can sleep during your lunch hour, then that’s what you need to do. If that means paying a co-worker to drive you home at the end of the day, in case you’re too tired to concentrate, then that’s what you need to do. Maybe you need to put a drape in your cubicle to block out the sun if it’s causing you migraines, or buy a foot massager for underneath your desk if you need an escape from the pain. You have a living to make. Don’t be ashamed of doing what you need to do to survive.
Alternative Employment Strategies
When working full-time is not an option, there are still more solutions. The trick is to play to your strengths and try to find a job that compliments your skill set. Joan Friedlander, author of Business from Bed: The 6-Step Comeback Plan to Get Yourself Working After a Health Crisis (2012) lived for years with a rather crippling case of Crohn’s disease, yet now works from home as a freelance author and coach. Crohn’s disease put a big dent in my sense of confidence and well-being,” says Friedlander.
It took several years of trial and error, but I was eventually able to recover that same sense of purpose and direction I felt as a training manager, through coaching, teaching, and writing. Furthermore, I had to figure out how to earn a good living, doing work I love in a way that supports my well-being. It has meant breaking with the traditional rules of business to find my own pathway to success. No matter your age or your life’s circumstances, the question about how to earn a good living doing work you enjoy is an important one. After all, we live in a world where health and well-being depend on it. Some people work for money, some for the joy of the work itself, and others because they’re called to a mission that won’t let go. As you contemplate success on this material plane, why not include capacity and ease? Because whatever job you are doing, you should be able to do it—or at least the important tasks—even on your worst day (from your toilet, hospital bed, on heavy medication, etc.).
For some, ease looks like a nine-to-five job; for others, it’s a telecommuting gig or perhaps even owning their own business. Friedlander asks: “What if you could spend most of your working time doing work that is as ‘natural’ as breathing? What might that look like, feel like?” For me, wha
t wore me out the most was having to visit clients in person. I could talk for hours on the telephone. I could write long, detailed, and clear emails. But, sitting through a meeting in formal business clothes trying to hide every tremor and migraine was exhausting. I just couldn’t keep up the act. I remember walking out of an investor meeting for one of my PR clients one afternoon and just sitting in my car trying to peel off my jacket that I’d soaked in sweat from stress. In my visor mirror I looked pale and my make-up was gone. But the thing that I saw most clearly in that moment was that I was so unhappy. This wasn’t how I wanted to spend my days. Why was I torturing myself doing something that didn’t support everything my body was telling me it needed? Wasn’t there another way?
There is. Finding out that telecommuting was an option was half the battle. The other half was allowing myself the freedom to take advantage of it. I think I felt like working entirely from home was a way of giving up. It took time for me to realize that adjusting my career to better fit my health wasn’t giving up, but rather putting my health first. I knew that if I could do that, I was ultimately making a better decision for my career in the long term. Taking the focus off my physical limitations meant that I could work on more complex projects for longer hours and with less stress. Letting my clients and employers know what was going on with my health led to more understanding and accommodations, and fewer excuses on my part. Taking a real, hard look at how my disease was affecting my career was a bitter pill to swallow, but without doing so I would never have been able to change things for the better.
Disability
You’ve probably thought about it. Is it possible that your illness qualifies as a full-time job at this point? Do you need government assistance to pay your bills and live your life? How does the process of securing disability work? Do you need a lawyer? These are all very common questions for patients staring down the application for Social Security Disability Benefits.
What is Disability?
Disability Social Security is a collection of services and benefits made specifically for those who cannot work because of a life-limiting illness. About eight million Americans are currently on disability. The benefits include:
Supplemental Security Income: This is the amount of funds issued to a patient each month to help them with living expenses they could not otherwise afford due to their inability to work full-time with their disease.
Social Security Disability Insurance: In most situations, if a person is eligible for Social Security, they are also eligible for a program called Medicaid. Medicaid is insurance that helps pay medical expenses.
Social Services: Those who are approved for disability may qualify to receive homecare, transportation, and food delivery services.
Interim Assistance Payments: This is when a person receives funds from Social Security while they wait to be approved for Social Security. The money given from these payments will be deducted from future benefits if the person is approved.
Social Nutrition Assistance Program (SNAP): Formerly known as food stamps, SNAP helps to pay for groceries.
Applying for Disability
Though the initial process of applying for disability is simply filling out a form, many patients find the rest of the process to be difficult. First you must assess whether you qualify for the service. The Social Security Administration lists the following as requirements to qualify:
To receive disability, you must have been disabled for at least five months.
Your condition must result in the inability to do any substantial gainful activity that can be expected to result in death, or has lasted or can be expected to last for a continuous period of no less than twelve months.
If you have more specific questions about your particular situation, there are Social Security offices in your area. You can call, make an appointment, and have someone walk you through the process and paperwork. They can also help to tell you if there are more programs in your community that might be able to help you. You can learn how to apply in your state through https://ssa.gov.
Staying One Step Ahead
At the end of the day, it’s about creativity. It’s about outsmarting your symptoms and being ready and waiting with a plan when they come barreling around the corner. You’re already at an advantage, because you know what’s coming. It feels like independence is always out of reach until we take the leap. Even then, there will be setbacks. Though there will be challenges, it is possible to remain independent. We’ve discussed how to choose jobs that fit your strengths, passions, and limitations and ways to make school a more progressive experience. In the next chapter, we’ll look at some strategies for remaining independent once you’ve secured a sustainable school, work, and social life.
Chapter 8
Remaining Independent
Do you feel like “Can you do me a favor?” has become your catchphrase? Do you feel like you’re always in need of help to do even the simplest things? It can be frustrating, humiliating, and demeaning. You wonder how continuously asking for support will affect your relationships with other people. Will they come to resent you or expect you to always be incapable of providing for yourself? Relying on others for everything gets old and eventually you wear out your welcome. Will you ever regain independence?
Not long after I moved out of my parents’ house I developed a pesky little condition called postural orthostatic tachycardia syndrome, which meant that as soon as I stood up from a sitting position, my pulse would quicken dramatically and my blood pressure would plummet. Sometimes my vision would black out completely before slowly returning. This resulted in many an episode of lying face down on my floor, waiting for my blood to begin circulating again and my vision to come back.
If I had known I would have spells like this during the endless months of apartment hunting, I probably would have never moved out of my parents’ house. Just the thought of being completely alone and helpless, unable to get myself to the hospital, or with nobody around to get me help, was terrifying. But, once I was on my own, I learned that without help I could still survive. I stood up. I dropped down. I laid on my floor for about five minutes trying to figure out what my next move was. I reached up and felt around for my cell phone on my nightstand. I crawled over to my dog’s bed and laid down on it. I called my mom and then waited there for her to pick me up. And, I lived.
You will survive something like this too. Whether it’s your mother, friend, or EMT who picks you up off the floor, or you manage to get up again with the help of assistive devices you’ve had installed, your dog is not going to eat your face. You will be way too prepared for an emergency landing to let that happen.
While there are certainly extreme situations in which you can’t be alone and help yourself, it doesn’t mean you can’t create safeguards to help you remain independent. Planning is key to a more predictable life with chronic illness. Your doctors won’t be able to tell you when the next flare will strike, but if you start preparing for it now, there’s little to worry about when it arrives. Knowing you’ve planned for the potential outcomes of your symptoms is a responsible move, an almost freeing one. Even if things don’t pan out perfectly, you’ve made an active attempt to prepare. You’ve taken control over what small things you do have control over.
You’ll find that your little safeguards have a huge impact on your work, social life, education, and relationships. Instead of landing you in sticky situations with angry bosses and disappointed friends, you’ll encounter understanding and respect for your ability to show up despite your adversities. While it’s great to please those around you and maintain those jobs and relationships, what’s the point if they don’t ultimately lead to your independence as a person? Plan for your job to be interrupted. Plan for your dates to be canceled. Just don’t forget to plan for you—your happiness and your right to live where and with whom you want to live. This chapter will help you evaluate if you are ready to go out on your own and provide some examples of how to establish the groundwork for autonom
y in your adult life.
Are You Ready for Independence?
Here are some things to contemplate before taking the big leap of independence. Start by asking yourself the following questions:
Can I handle the day-to-day management of my disease? Are you going to the hospital a little too frequently? Have you been able to get yourself to and from doctors’ appointments, get your medications, and address issues in a safe amount of time?
Can I afford this? Beyond the usual responsibilities of independent living, like rent, utilities, car insurance, car payments, gas, or public transport costs, you’ll have the burden of additional financial problems. These include insurance premiums, appointment and prescription co-pays, fees for alternative therapies, and the upgraded cost of specialty foods like gluten-free products.
Am I physically capable of independent living? If not, can I afford or get the help I need to make it all possible? Take a moment to really think on this one. Will you be able to clean your home, go out and stock your fridge with groceries, take care of your pets, prepare your own meals, and manage your bills alone? If not, can you afford to pay someone to help you do these things? Or trade something with a friend or neighbor to get their help for free? Review chapter 6 again and think about your support structure. Can any of these resources provide help?
Surviving and Thriving With an Invisible Chronic Illness_How to Stay Sane and Live One Step Ahead of Your Symptoms Page 11