Lana Barhum is a legal assistant, patient advocate, freelance writer, blogger, and single parent. She has lived with rheumatoid arthritis and fibromyalgia since 2008 and uses her experiences to share expert advice on living successfully with chronic illness.
We often associate chronic illness with the elderly, but chronic illnesses are widespread among the working-age adult population. In fact, the number of chronically ill working-age adults grew by 25 percent in the United States from 1997 to 2006. According to the CDC, as of 2012, half of all U.S. adults—117 million people—have one or more chronic health condition. This increase has created many more barriers for chronically ill workers, especially when their disabilities are invisible.
Employment burdens when you are chronically ill
Ryan was diagnosed with juvenile rheumatoid arthritis (JRA) when she was just 15 months old. She shares some of her experiences seeking out employment while trying to cope with JRA.
1. Employment training and continuing education
Seeking out jobs can be quite challenging when education opportunities are limited due to illness. Whether you are attending college as a young person or as an adult trying to further your career, chronic illness can stand in the way of your goals. It can disrupt learning and make you feel as if you cannot reach your full educational potentials. Because of this doubt, many lower their career aspirations. This has been the case for Ryan. She says:
"I didn’t graduate from an actual university, but I went to a technical school for medical billing and coding. I did miss time for doctor appointments, flare-ups, and physical therapy, but I was able to manage the course load and complete the program. I think attending an actual university would be more difficult since they are stricter and my health would have gotten in the way."
2. Feeling held back
The prospect of finding a job or keeping one when you are chronically ill can be daunting. You worry about discrimination and accommodations, but mostly, you worry about how much chronic illness holds you back. These are concerns that weigh heavily for Ryan, often on a daily basis. She shares:
"Having a chronic illness means your pain can change within 20 minutes and there is never a set time for the pain. When you’re healthy you don’t have the same concerns. Daily, I have to wonder: “Will I physically be able to get dressed?” or “Am I able to drive today?” How can I work a full-time job when these simple things are obstacles?"
3. Societal attitudes
The chronically ill working-age population struggles with societal attitudes when seeking employment. Many are unwilling to disclose their health conditions when applying for jobs because they expect discrimination and stigma through disclosure.
Ryan understands her limitations because she has been chronically ill most of her life. But she also finds that seeking out employment with this understanding can be difficult. Ryan shares:
"It isn’t easy being chronically ill and trying to find employment. I have been looking for part-time work for over a year. I have also faced barriers in terms of the kinds of jobs I am able to do. Many jobs [I am qualified for] require heavy lifting or standing for long durations, and I can’t do either."
She has experienced some barriers on the job as well:
"While working once at a store fitting room, I could not use certain equipment for stapling or hanging clothing. I worked there for a few days before I had to tell my manager I couldn’t physically do the job."
4. Job satisfaction and progression
People with chronic illnesses can become dissatisfied with their jobs if their diseases aren’t well-managed, if they are not receiving adequate workplace support, or if they have work limitations. Being sick can also affect career progression. Chronically ill workers are often afraid to take risks because they worry their health will not allow them to perform a job that is more challenging.
Job satisfaction and progression have both been obstacles for Ryan. She shares:
"My symptoms and pain made jobs harder to do, which made being happy at the job difficult. I am unemployed right now and it is definitely because of my illness. I have been having more health-related issues of late that have prevented me from looking for work, such as too many doctor appointments and medications not helping."
Having these obstacles has also affected Ryan’s decision to look for another job.
"I am unemployed and unable to start work right now due to health limitations."
5. Facing the future
The future for those with chronic illness can cause a lot of worry, especially for those in the younger generation. There are still many years of employment ahead, and the same number of years for health worries. And this takes a toll on emotional and psychological health.
Ryan shares how barriers to employment have affected her psychological and emotional health and her worries about the future.
"It is hard being unable to find career opportunities and missing out on a huge part of life. It makes me feel abnormal because I’m not out 9:00 to 5:00 working like most people. I feel stuck in my life right now. I have developed depression and anxiety since being unable to work. Most times, I feel guilty that I am unable to work and I blame myself even though I know it isn’t my own fault; it’s the disease. Being positive and remaining hopeful are the only things I can do in the meantime. I also worry about how I will take care of myself physically and financially as I get older. Will I ever be able to afford my own house? Will I ever feel well enough to work full time? And so much more."
Continuing to work or not?
Due to improved treatment options, the number of chronically ill employees who continue to work is increasing. But the National Organization on Disability reported in 2010 that only 21 percent of disabled people in the United States ages 18 to 64 are working.
Not all chronically ill are disabled, but there is a common worry for those who are working—the fear that their potential absence from work and poor performance, due to not feeling well, could lead to job loss. That anxiety makes so many drag themselves into work feeling sick and doing work that isn’t their best.
If you are fortunate, you can manage your illness with minimal effects on your job performance. But for some, accommodations, such as flexible work hours, changed job descriptions, and assistive devices, just aren’t enough to ensure employee productivity. In that case, your options may include a job change, taking part-time work, or applying for social security disability if you are unable to work.
Remember, your situation is unique and depends on resources available and the direction in which your health is headed.