Written by Marisa Zeppieri, LC Founder
Working when living with a chronic illness like performing a tricky balancing act; for many of us, our mind is often eager and full of ideas but our body can sometimes stop us in our tracks. Over the years (through LupusChick.com), I have literally met thousands of lupus patients and people with other chronic diseases who are having a hard time navigating the workforce. Finding a remote or telecommute job that pays enough to survive, or working for a company that understands the ups and downs of chronic illness can be difficult.
In fact, for many, it’s impossible.
Currently, LupusChick’s social sites have a monthly reach of approximately 400,000+ people. Employment is typically the hot topic on our site, in addition to lack of treatments, and public education about chronic illness. Families are struggling to pay bills and afford treatments because finding employment that is somewhat flexible isn’t easy.
There are success stories though, and that is what made me think of writing this column. How can we create more of these success stories? We can take a step in the right direction when employers become more educated about chronic illnesses and see the value that workers with chronic illness can bring to an organization.
The World Health Organization (WHO) defines a chronic illness as “any illness that leads to health problems and disabilities requiring ongoing management for a period of years.” Chronic illnesses are tough and unpredictable. We never know when they are going to flare up. But even dealing with the speed bumps and detours that come along with an illness, many of us want to contribute to society and also earn a stable income that helps us get off government programs and assistance. For some people, they were forced to stop working only because of a health condition.
Sadly, it isn’t uncommon for someone with chronic illness to be ridiculed or labeled as unmotivated or lazy, or not wanting to work so they can “live on assistance.”
This is simply not true.
As someone living with lupus for 16 years, I will tell you statements like these are hurtful, ignorant, and can break the spirit of someone who wants to accomplish his or her goals and dreams. Some of my greatest achievements in life have been in the past decade, all while I dealt with Lupus. In addition to weekly IV treatments, hospitalizations, chemo and just “bad” days, I built my career as a journalist, an author, and the founder of LupusChick, a NY-based nonprofit. Granted, it took me longer to do these things than someone who is healthy, but achieving my goals were still possible.
One reason for this was having help and support when I needed it, through employers, friends and family. Support and occasional accommodations can make all the difference to someone faced with chronic illness and I’m proof of that.
Companies willing to hire people with chronic illnesses or disabilities and see their value can truly be a life-preserver for a person who wants to contribute.
So, how can an employer help an employee living with chronic illness succeed? Here are a few helpful tips:
1.Allow for transparent conversation – Years ago, I went through a long interview process to become a journalist with Gannett. My interviewers stood apart from those of other companies because my success in the patient advocacy and chronic illness world didn’t scare them. In fact, many told me it inspired them and were impressed that I created something successful from scratch. They actually had many questions for me. There was a comfort level and transparency during the interview that allowed me to be open. I told them I would need to work one or two days remotely; one day would involve me getting my IV treatment (which requires most of the day at the hospital), and the other day to recover. They were happy to accommodate and I took the position.
I’ve had job interviews that took an awkward and uncomfortable turn once the topic of chronic illness came up. I notice it more with people who haven’t honed their interpersonal skills and perhaps have had less experience around people with chronic illness. This typically makes the job interview unpleasant and I feel less inclined to be transparent about any accommodations I would need.
Now, does everyone feel comfortable bringing up his or her illness on an interview? Absolutely not. And I would never recommend someone do so when they are uncomfortable about it. However, I prefer to be upfront about my health conditions, laying it all out on the table so everyone has the info they need to make a decision. It will scare some employers and turn others off, and I am okay with that. It lets me know that wasn’t the right environment for me.
But employers committed to workplace health management should encourage transparent conversations at the start of the hiring process to understand what accommodations are needed, if the topic of illness has come up. This lets the employee and the employer have a successful interview and hopefully working relationship.
2. Create a buddy system – Employers can spot leaders and mentors within their organization. These individuals are typically ideal to team up with an employee who has an illness or disability. The buddy can fill the employee in on office happenings when he or she is unable to work, take detailed notes at meetings to share, or set up a Skype or FaceTime session during meetings so the employee can watch from home. A good buddy is someone who is encouraging, displays empathy, listens well and is respectful and understanding of chronic disease and the uncertainty of it all.
3. Offer flextime, if applicable – More employers are offering remote, telecommute and flextime options. In addition, shifts that are broken up during the day might work better for some than a straight eight-hour shift. For example, at Gannett, I would work in the morning, go home for a few hours (typically nap and eat), then return late at night to write my stories and file them. It was a great fit. This won’t work for everyone, but having the option to do this would be a good step in the right direction.
If you are an employer currently recruiting employees, I ask that you keep an open-mind (and maybe these tips handy) when interviewing someone with a disability or chronic illness. In addition, check out this comprehensive recruitment guide for employers created by The European Network for Workplace Health Promotion.
In the meantime, I’m currently on the hunt for a new position, so if you are one of those flexible employers, give me a buzz…
Portions of this article originally appeared on LupusNewsToday
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