What It’s Like Working With a Chronic Illness

I’m not going to sugar coat it:  working a full-time, 9-to-5 job with a chronic illness sucks (although many may argue that working full-time sucks regardless). In this article, I’ll share with you how my disease affects my work and how two different full-time employers responded to these issues. Keep in mind I am at an early stage in my career, and I’ve mostly been working in the humanities. The full-time employment I refer to here is in Ireland, so the policies and attitudes may not exactly match those in other countries.I should start by telling you what my rare disease is. I have common variable immunodeficiency, which, in very basic terms, means I have half the immune system of a normal adult. Unfortunately, for me, as I’m sure you can guess, that means I am much more likely to get a cold, the flu, infections, pneumonia…the list goes on.Related:​ When I Feel Like an Imposter as Someone With a Rare Chronic IllnessHere’s how that affects my work:I am sick more often than your average worker. If I have a whole month without getting a cold, the flu or an infection, that’s a great month for me! I’ve found that most jobs are reluctant to offer more than the minimum legal number of paid sick days (if there is a legal minimum), which means I may miss out on pay or risk being fired if I stay home from work.I have more doctor’s appointments than your average worker. I have a few regular specialists to see and a general practitioner. None of their offices are open on the weekends, and few are open past 5 p.m., forcing me to miss out on work to head to the doctor.I have to go to the hospital for a plasma infusion every three weeks. This issue is the most dreadful to bring up. I have to go during 9–5 business hours and spend two to three hours at the hospital, after which time I am usually exhausted and grumpy. This means I usually have to take a half-day every three weeks, which employers are usually equally grumpy about.Related:​ What People Living With Primary Immunodeficiency Really Want This list is may seem particularly short, but only because I have chosen to cover the biggest and most important issues I’ve faced in my career. If I covered everything, I’d have to write a book!When I first began searching for a job, I consulted a career counselor about when to tell a potential employer I would need a few hours off every three weeks to head to the hospital. I was particularly concerned as I did not want to be dishonest, but I was also afraid that I may not be hired if the employer knew I would have to take more time off than other, presumably healthier candidates. She confirmed my suspicions and told me the best plan of action is to wait until you are offered the job, and then state it as part of your terms of acceptance. She warned me that although companies can’t discriminate based on health, if you tell them in advance they may exclude you from the applicant pool and tell you it was because of something else. When you’re offered the job, it is a bit easier to negotiate these things (or so we thought).Related:​ 7 ‘Hidden’ Things I Don’t Let Show About My Life With Primary Immune DeficiencyWhen I was offered this job, it was over email. I figured that before I signed the contract on the day I started, I would inform the boss of my situation. The contract wasn’t ready on my first day, so I mentioned my situation to my boss at the end of the day. I offered to make up the hours I would miss during the days leading up to my absence, but he was not pleased with this proposal. He quite sternly said that those hours would have to come out of my vacation days. Defeated, I went home and pondered whether I had made the right decision taking the job.The next day, I was approached by the office manager, who told me that the boss had told her and the accounts manager about my situation. I felt as though my private business was now all too public, but as there was no HR department, there was really nothing to be done. The office manager told me they had convinced the boss to allow me to work flexible hours only during the week I would be at the hospital. I was not permitted to have flexible hours any other time, nor was anyone else. The stern and emotionless reaction of my boss and other administrators made me feel as though my illness was a massive inconvenience to the company. In reality, I always managed to meet my deadlines and did high-quality work. Despite all that, I felt that management harbored some resentment for my absence.Another issue that arose at my first job was the company only offered three paid sick days per year. I was sick for at least two weeks per month in my first four months on the job, forcing me to take some unpaid leave and occasionally come into work sick as a dog. My doctors and I concluded I was getting sick more frequently since starting my new job, likely because of being in a small office full of people and because of the lack of ventilation in the office. Many of my coworkers were hoarding their few remaining sick days at the time and would therefore come in when they had a cold to avoid missing out on their paychecks.While most managed to avoid catching each cold or flu that came in the door with my coworker, I did not. Every cough and sneeze found its way to me. I asked some other primary immunodeficiency patients how they combated these issues at work, and some told what seemed to me to be marvelous tales of arrangements with their employers that allowed sick workers to do their jobs from home so they didn’t spread their contagious illnesses. One friend even relayed that his boss would send sick employees home to keep him safe.Their success stories emboldened me to face my boss and ask if we could encourage people to work from home when they have a contagious illness so as not to infect others, particularly those at extreme risk (me). My boss had very little sympathy for my situation and promptly denied my request. My hopes were dashed. Fortunately, in a short while, I would leave that job and move onto a somewhat healthier workplace.My second job was better and worse. I was allowed a bit more of a carefree schedule as I was a temporary worker. If I wanted time off, it wasn’t always paid, but I did get to come and go as I pleased, without a guilt trip from management. There was even a short stint at the office where we were on an 8­–4 schedule. Leaving the office at 4 p.m. made life infinitely better! Not only did I have more daylight in my life, but I could also make it to the general practitioner before they closed at 6 p.m.. Unfortunately, job #2 offered no paid sick leave, as I was on a temporary contract. Fortunately, the office was huge and had great ventilation. In addition, I frequently had the opportunity to get up and move around. I took no sick days during my first three months there.Not knowing how long I would be in my temporary role at job #2, I waited until a week before I had to go to the hospital to tell my boss that I’d be out for half the day. He said that was fine. Three weeks later, I was still in the job, so I mentioned I’d be out again. My boss grimaced and, in front of many of my coworkers, said “You’re at the doctor’s a lot; what’s wrong with you?” I mentioned that I had to get a blood transfusion, and he quickly replied, “It’s not contagious, is it?” as he backed away from me. I don’t know if he was trying to infuse some humor into what was a difficult topic, or if he was just an unsympathetic, self-centered person. Either way, it was a particularly alienating conversation to have. I felt both foolish and alone.The only nice thing about that experience was that I was actually allowed to make up the hours I missed. Despite his initial insensitivity, my boss at some point did allow me to make up the hours without further questioning. I was able to get my treatment and make money, even if I had to suffer through yet another awkward situation with a less-than-sympathetic employer.After all that, what would I do differently? I’ll tell you:Look for a job with flexible hours. Not having flexible hours was a huge source of stress for me. There were appointments I never rescheduled because I was too afraid to miss any more work for fear of being fired. I also could have used an office that was downtown (closer to the doctor’s) and an hour for lunch (so I could see the doctor at lunch). In the future, I will look for jobs with flexible hours or off-peak hours, and central locations.Look for a job that lets you work from home (at least sometimes). I wouldn’t like to work from home all the time, as I’m a social person, but it would be nice to have the option, especially during flu season.Look for a job that has a comprehensive benefits package and lots of sick leave. Is this point a bit idealistic? Yes. Let me dream.Make sure you have a sympathetic boss (or a solid HR department). It is nerve-wracking to approach any boss with bad news, even if that bad news isn’t your fault. Finding a boss that respects and understands your struggles is a life-saver. Sure, everyone would love to have a generous, understanding boss, but if you can’t have that, at least make sure there is a good HR department to sort out any issues that may arise between you and your employer due to chronic health issues.Had I known all of this before beginning my job search, I would have done things differently. Unfortunately, however, being selective isn’t always an option — especially with entry-level positions, where the employee has little negotiating power. When an employee has little experience, they can hardly get enough pay, never mind benefits and flexible hours. All I can say is, I sure can’t wait to be a student again! Talk about flexible hours!Please do keep in mind that I am in the very early stages of my career, and many employers may react differently depending on how long you’ve been with the company, your area of specialty, your skill set or your level of experience. As my fellow primary immunodeficiency warriors’ stories showed me, there are understanding employers, and there are success stories. Having a chronic illness doesn’t necessarily mean that you can’t hold down a full-time, 9-to-5 job; it may just mean it’s a little bit harder.Have you had similar experiences working while chronically ill? I would love to hear other perspectives!Follow this journey on Peanut Harvester. Read more stories like this on The Mighty:When I Asked Myself If I Was Living Life to the Fullest With IllnessWhat It’s Like to Be a New ‘Chronic Mama’Why the First Diagnosis Can Be Harder to Accept Than the Rest

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