3 Things You Should Know When Working with a Chronic Illness

(as originally printed in my regular IGLiving Magazine column)

Whether you’re employed by a company, working as your own boss, are unemployed and hoping to become employed once again, or on disability and wondering if going back to work might be a possibility—there are a few things you may not know about managing a chronic illness and a career.

So many symptoms can make the idea of getting into the working world seem like a laughable pipe dream. How would you manage things like chronic fatigue, brain fog, immune deficiency, weakness, irritable bowel symptoms, neurological episodes or frequent hospitalizations?

Jobs require you to take on a role of responsibility—and if you can’t predict the severity or the onset of your symptoms—how can you expect your employers or your clients to understand when you suddenly become unavailable?

If your situation with your health becomes more severe and your employment status changes—how will that impact your lifestyle, your resume or even you’re your ability to pay rent that month?

Realistically, trying to pair the world of complex illness with professionalism is a complicated task and while there are so many topics to research and overarching concerns—here a few tips and ideas to be aware of to help you get moving towards a sustainable career with a chronic disease.

Know Your Rights as an Employee

You may have already known that you can’t be fired from your place of employment for having a chronic illness—but did you know that your human resources department is also supposed to help accommodate you in case of illness?

Companies want their employees to be as functional as possible on the job and under the Americans with Disabilities Act, they are required to make reasonable accommodations to help you do your best despite any disabilities. Here are some on-the-job accommodations you should feel open to asking for if you feel they will help mitigate the effects of your symptoms on your job performance:

  • Flexible work hours and a self-paced workload
  • Periods of rest
  • Provided with memory aids like schedulers or organizers
  • Provided with mobility devices like scooters or golf cart access for large work campuses
  • Better lighting/ Elimination of fluorescent lighting
  • A fragrance-free work policy
  • A modified dress code to help with temperature sensitivities

Take Advantage of Working From Home

There are so many team communication tools to use now, that many companies are eliminating the overhead of brick and mortar office locations and allowing employees of all kinds to work from their home offices. Careers we could have never imagined operating from remote locations ten years ago are now becoming the norm. Where once writers, accountants and graphic designers used to be the only positions we saw operating from home—there are now opportunities for professionals like teachers, nurses, psychologists and even interior designers

Learn About Working While on Disability

For many patients, just going through the arduous legal process of getting on disability can make the idea of going back into the workforce overwhelming. What if they can’t find a job that accommodates their abilities, skillset or need for accommodations? What if they cant’ work enough hours or find enough clients to make a livable wage? Will they have lost all of their security for nothing?

Fortunately this isn’t the case! When on Supplemental Security Income (SSI), patients cannot be doing what is referred to as SGA or “Substantial Gainful Activity.” This means that they cannot be making more than $1,180 (or $1,970 if they are blind) a month. For recipients of SSDI, there exists a trial work period during which patients can make more than the SGA amount without losing their benefits. This way, patients can test their ability to find income while receiving full benefits—regardless of whether they make more than the SGA amount for a none-month period.

SSA considers a month where a person has an income of more than $850 a trial work month. Even after completing the nine months of a work trial period, patients can still receive SSDI benefits for any month where their earnings fell below the SGA level for a period o 36 months.

Moral of the story: you actually do have a cushion to test out your ability to work while on disability if it’s something you feel ready to test out.

For more tips, advice and resources on working with a chronic illness visit SSA.Gov, EEOC.gov and Askjan.org.

Want to see more articles like this? Check out my regular column in IG Living Magazine, available at your local infusion center, hospital and doctor’s offices!

Want to read a whole book full of advice on living with chronic illness?  Check out my Amazon best-seller, Surviving and Thriving with an Invisible Chronic Illness. 

Want advice in-person? Check out my future speaking engagements or invite me to your next patient-centric conference or meet-up here.

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