Surviving and Thriving With an Invisible Chronic Illness_How to Stay Sane and Live One Step Ahead of Your Symptoms

by Ilana Jacqueline

  Sleeping: For students whose fatigue cuts days short.

  Standing: For students who may not have the stamina for oral reports, field trips, or lines.

  Eating: For students with time-sensitive feeding schedules, feeding tubes, or other GI issues.

  Lifting: For students who cannot carry their books or lug around backpacks.

  Reading: For students who need to sit closer to the front of the class, or need translation, braille, or other forms of visual support.

  Concentrating: For students who need extra time to process materials.

  Breathing: For students who need breaks for nebulizer or inhaler use, or need to stay away from areas of the school with allergens or mold.

  Hearing: For students who need help with audio support.

  Seeing: For students who need help with visual support.

  Communicating: For students who need translators or other forms of communication support.

  Walking: For students who need to use accessible parts of the campus.

  The fact is that it behooves your school to see you graduate. Having another drop-out reflects poorly on them. Be open and realistic with your academic advisors about the severity and complexity of your disease. Walk them through a day in your life and see what small and manageable adjustments can be made to make things a little easier for you. Eventually, if your illness progresses to a point where attending school is no longer possible, your counselors and advisors should be able to guide and assist you by getting you into an alternative schooling option.

  Tips for a Conscious Education Plan in High School and College

  Start seeing your advisors early and often. Allow them to walk you through your entire schedule of intended courses over the next few years. You don’t want to make the mistake of wasting time with unnecessary classes.

  Try to schedule more intense classes during periods with less intense symptoms. (If your allergies are more irritated in the winter, plan your more advanced courses in the spring.)

  Don’t be afraid to try different educational alternatives. Summer school, virtual school, and home schooling are all great options for those who may not be able to fit a full school day into their schedules or energy budget.

  Remember that nothing is ever set in stone. You may feel that some schools have an inflexible attitude towards attendance or deadlines, but you’d be surprised how much they can help you work with the tides of your disease.

  Start from the top down. When a crisis hits and you need an immediate and drastic change in your educational plan, don’t start with your teachers, start with your school’s administration. Make an appointment with the principal; they may be able to help bend certain rules to get you through the semester.

  Be a part of the team. Your attitude towards your education is what matters most. All the exceptions in the world can be made for you, but if you don’t have the desire or drive to get through school, you will not succeed. Promise your educational team that you’re in this for the long haul, that you’re as committed to the success of your education as they are, and that you’re going to take full advantage of the leeway they’ve given you to focus on your school work.

  Managing a Career and Employment

  When you transition from student to employee, you will probably encounter less support. The first step is to think long and hard about what kind of employment best suits your abilities. By the age of sixteen, few people realize that they’ll probably never be able to work a nine-to-five job. The normal course of employment just isn’t an option for patients with life-limiting illnesses. Setting realistic goals for their careers is something that needs to be taken on with out-of-the-box thinking. The good news is that technology has moved us into an age where your desk doesn’t necessarily have to be in the same building as your co-workers to do your job. Building the necessary skill set to be a work-from-home employee, consultant, or self-employed professional is possible. There are also many adjustments for disabilities that can be negotiated in standard workplaces. In this section, we’ll cover some of the ways you can secure the best accommodations for your needs at your workplace.

  Expectations about Your Career

  Is a person with rheumatoid arthritis going to be a massage therapist? Is a patient with ulcerative colitis going to have a stupendous career as a food reviewer? What about someone with chronic fatigue—do you think they’d be a quick hire as a physical education teacher? I’m not writing this to slay your spirit or crush your dream, but you’re in for a rude awakening if you expect to go forth into the night with your spandex and your cape jumping from one fire escape to another with inflamed tendons. It’s important for your physical and emotional well-being to test your limits regarding what kind of job you can handle. Want to be a cop? Do a ride-along for a few days to see if you can handle the pace. Want to be a teacher? Assist in the classroom for a few weeks to see if the responsibility of managing students is too much for you. Want to be a food reviewer? Ask for the chef’s specialty without asking if it has wheat, dairy, or shellfish in it.

  For patients who discover their diagnosis earlier on in life, there’s a great chance they’ll be able to avoid massive disappointment and turmoil by translating their career goals into something achievable. But what if your disease hits you in the middle of med school or just as you got that promotion you’ve been shooting for all year? Some think of it the way a cancer patient chooses to shave their head before chemo. They know now that something is happening and that to live and have a less painful life, they need to have this therapy. This therapy will cause them to lose all their hair. It’s either going to happen the easy (and potentially less terrifying) way, or they’re going to watch clumps of their hair fall out in the shower every night until they’re bald.

  In your situation, you can choose to fight against the tides of your disease and drag yourself through your work day with all the stress and anxiety it will cause, or you can choose to accept a change in pace and profession and move on. It may not seem like you’re making a career choice when it comes to chronic illness and employment, but you are. Neither of these choices are wrong and not everyone with a chronic illness chooses to give up their day job, even if it means spending ten hours a day on their feet. Some patients’ illnesses can be managed to the point where they can live a completely normal life. But most patients’ lives revolve around flare-ups and remission.

  You may begin to ask yourself: When will a flare-up strike next? What will I do if I can’t call in sick? What happens to my insurance if I’m fired? Will my job really take me back when I’m well again? Having a disease doesn’t mean lowering your expectations about your career, but instead expecting a different skill set from yourself. People with chronic illness contribute to the well-being of the world every day. They help people, employ people, and even run businesses from their hospital beds. There are so many jobs that can be done from the relative comfort of your own bedroom.

  The following are some examples of jobs you can do online:

  Marketing, Promotions, and Advertising. Are you a creative type? There are many opportunities to be part of a company’s wing of marketing from your home base. Many employees teleconference in to team meetings, and send material back and forth over email.

  Creative Writing and Copy Writing. If you’ve got a knack for the written word, you may be able to land a gig as a copywriter. Copywriters come in all shapes and sizes. You could find yourself writing content for anything from the back of shampoo bottles to paid posts on different lifestyle websites.

  Video Editing and Graphic Design. Do you have skills in this technical field? With the right software on your computer to do editing and design, most of these positions are done as a freelancer or from home.

  Appointment Setting and Virtual Personal Assistant. There is a whole world out there of employees and contractors who work from home. Consider teaming up with one of these experienced workers and acting as their virtual secretary.

  Social Media Management a
nd Community Liaison. With the rise of social media like Facebook, Twitter, Instagram, Pinterest, and LinkedIn, many companies hire one person devoted to interacting with their audience, answering questions, and forwarding complaints or concerns to the right department.

  Tutoring and Teaching Online Classes or Instructional Videos. Did you know you can make a living teaching others about some of your favorite subjects through video sharing sites like YouTube and Vimeo? These people teach everything from how to apply a sexy eyeliner to how to build Ikea furniture.

  Science, Medicine, and Technology. Contrary to popular belief, there are positions for professionals in these fields that involve telecommuting. In recent years, there have been great advancements that allow doctors to see patients through video conferencing. Many pharmaceutical companies employ legions of nurses to answer phone calls related to patient concerns. Doctors, nurses, and scientists are also in great demand as consultants for new diagnostic technology, medical apps, tutoring, and teaching.

  These are just a few ideas! Keep in mind that there is always a way to have a meaningful, fulfilling career with an active chronic illness; it just takes time, determination, and planning.

  Four Basic Rules for Dealing with Your Disease and Your Career

  Rule #1: Nobody Needs to Know Your Business Unless You Tell Them

  There’s a long list of people you don’t have to talk about your disease with. Your employer or potential employer is on that list. Legally you don’t have to disclose anything about your disease. The Americans with Disabilities Act prohibits discrimination against people with disabilities in employment, transportation, public accommodation, communications, and governmental activities. You don’t need to mention it on your resume or even in your interview. And, hey, if your illness never has and never will affect your job performance, you go on with your bad self, baby! Nobody needs to know your business. But before you try to shove that bag of saline and IV pain killers in your purse, ask yourself one question: Am I being a moron?

  If your disease is plainly, obviously, and inevitably going to get in the way of your work responsibilities, you need to seriously assess where, how, and to whom you’re going to be disclosing that information.

  Ask yourself the following questions:

  Do my symptoms ever interfere with my work projects?

  Do I sometimes need days, weeks, or even entire months off because of out-of-control flare-ups?

  Does my high-pain level mean I might be at a higher risk to lose my temper with a rude customer?

  Do my sleep attacks make me an unfortunate candidate to drive the school bus?

  As a flight attendant, during a possible plane crash, will all the passengers die on the plane because they didn’t get directions on how to attach their oxygen masks because I was in the bathroom with the runs associated with my chronic disease?

  Does my immune deficiency disease mean that my position as a secretary at a pediatrician’s office is probably a very bad, germ-ridden idea?

  If you think your disease might impact your job performance down the road, you should think about saying something. You might say something like, “I have narcolepsy, which means I’m going to have to create my schedule around my fatigue until I can find a treatment that works well for me. I’m happy to take some work home for nights and weekends to make up for time missed.” This is also a good time to whip out your elevator speech. However, even though it violates the protection you should receive under the ADA, you can’t do a single thing if a company eliminates you in their search for an employee because of your illness. They can just blame it on something else, like not enough experience.

  Rule #2: You Don’t Have the Luxury, So Deal with It

  Unlike many other people your age and in your field, you do not have the luxury of slacking off, being a bad employee, or not working hard at your job. This is just another fact of life under the umbrella of accepting your chronic illness. The truth is that you will always have to work hard because you need a job that has health insurance and enough financial stability to support your medical bills and other expenses related to the disease. The good news is that when you’re good at what you do, and it’s something you like to do, the hard work is worth it.

  Rule #3: Do Something You’re Good at and Something You Like

  Do something you love and that you’re good at. This will make the long days, the bad days, the days where you need to push yourself to make it through the hard stuff, more tolerable. You may be thinking that’s not realistic: “Will I have to work a shit job because no one would possibly hire someone like me to do a job I love?” As in all areas of life, this is another area to practice self-love. What’s the worst thing that could happen if you go for the gold?

  You did not lose the privilege to be loved when you got sick. You did not lose the privilege to be treated with respect. You did not lose the privilege to work toward a job that gives you meaning. It does not always mean you will work the exact job that you want, but you can certainly gear your search toward the kind of career you’d ultimately aspire to. Take your time. Think about where your skills are most needed. What do you have to offer? Your body may not be what it once was, but there’s more to you than just a broken body.

  Rule #4: Accommodate Yourself

  This rule is about realizing that the only person who can make you comfortable in your life is you. Ask for the quiet office that will give you space and serenity to work through the intolerable early start of migraines. The only person who knows what you really need is you. So, ask for those flexible hours. You control whether you sit or stand. Take a break every two hours, or for two minutes every hour.

  Take care of yourself by either taking it easy or asking for things to make your life easier. You can ask for things like an upgraded desk chair for back pain, to work your last few hours of the day from home, or to stay a little later at work so you can take off a little earlier the next day. There are a lot of changes that can be made to accommodate your needs. When you choose a job that you are qualified for and are good at, it’s okay to ask for help. Companies want to keep good employees, and good employees can usually be found at companies that honor their requests for a comfortable work environment.

  Rule #5: Plan for the Worst-Case Scenario

  Some people are alarmists. Some people are hoarders. Some people have nuclear fallout shelters underneath their kid’s tree house. I’m not saying you should be any of these people. I’m just saying that you should have a healthy sense of reality when it comes to your job security.

  Here’s a truth for you: Remission is a blissful period where your life comes together in all the empty places. Here’s another truth for you: Chronic doesn’t mean “just that one time.” Prepare for that worst-case scenario. Prepare for the idea that you could lose your job because your illness might return. It can happen. Some ways to prepare are: continuously updating your resume with new skills, always being on the lookout for jobs that allow you to telecommute or create your own hours, or talking to your boss about accommodations before your flare-up.

  Frequently Asked Questions: Working with an Invisible Chronic Illness

  You probably have been in many scenarios already where you’ve felt confused about when, where, and with whom you need to share your disease details with. What are your rights? In general, what is the right thing to do? Below are some frequently asked questions regarding the workplace and your disease.

  When should I tell my potential employer about my chronic illness?

  This is a frequently asked question and the answer is, well, that depends. Will your illness affect your job performance? Depending on the sort of job you have, you may not have to tell your employer at all. If you feel that even through a difficult flare-up of symptoms you could still complete your work to the best of your ability, then it’s no one’s business but your own. However, if you feel that there is a chance you could seriously impact the quality of your company or even your co-worker’s jobs, then you do have
a responsibility to be upfront about your illness. Even if you do feel compelled to explain your illness, make sure to come forward with a plan of contingency on how you will make sure your job performance isn’t affected, such as training another employee to take over in case of an emergency, or being willing to perform job tasks over the phone or online from home.

  My illness is out of control right now, but I have the opportunity to take on a job. Should I go for it or turn it down?

  When opportunity knocks, it can be totally soul-crushing to shut the door in its face. At the same time, you need to be realistic about what you can handle. If you’re constantly in and out of the hospital and this opportunity requires a strict schedule that you have to abide by, you may have to turn it down. The trick to keeping those doors open is to make strong connections with those who are offering you the opportunity. Be honest with them about your condition and say that even though you feel they’re right, and you would be the perfect person for the position, you’re just not physically capable of doing this job without accommodations. You’d be surprised, but many times a pragmatic explanation will not only help to kick open the door, it will roll out the red carpet with benefits and allowances.

  As a freelancer, there have been multiple month-long periods where I’ve just had to say, “no thanks” even when I was hurting for the money. Most of the time the jobs were still waiting for me when I got better, and other times I was referred from those who had needed me in the past to friends or associates that needed my help now. Better to save your reputation as a good (but hard to come by) consultant, than as a flaky one.