Living and working with a chronic illness

I knew I would have less energy for my active lifestyle as I got older. I was ready for that eventual reality, but nothing prepared me for having a chronic illness.

Life isn’t easy at the best of times, but living with a chronic illness adds another dimension of complexity, and it’s something I have some personal experience with. In today’s post, I will give some background on my particular story and the profound impact disability and disease can have on someone’s work and life. I also have some stats to share and some things I wish more people knew. I aim to bring awareness to something directly affecting more than half the population. It also might explain why there is no Roadmap Weekly newsletter some weeks.

Disclaimer: I can only speak for myself and my own experiences; everyone’s situation will be different. Even two people with the same disability or chronic illness will have vastly different experiences and challenges in life.

Life before becoming ill

Before my health declined, I was very active. I worked out and was pretty healthy. I went skiing 3-5 days a week in the winter, and in the summers, I was sailing or working on restoring an old sailboat. I started a band with some friends and led worship at two church services on many Sundays. During the day, I ran a business while working full-time at an agency. After work, I’d pick up my stepson from school and make dinner. I would go to the park and events with my wife and kids. I also found time for things like teaching part-time at a local college and volunteering at events.

The above is not an exaggeration. Was my busy lifestyle sustainable to begin with? Probably not; many people who knew me said as much. I knew I would have less energy for all these things as I got older. I was ready for that eventual reality, but nothing prepared me for having a chronic illness.

How it started

I don’t remember exactly when it started, but there were days I couldn’t lift weights at the gym, and I was so exhausted that I would nap most of the day. One day, after walking a few blocks to visit a client’s business, I struggled to make it up the stairs to their office on the second floor (I pulled myself up using the railing while no one was watching). Not even an hour later, everything seemed fine again. I had many warning signs like this, but until then, I always thought it was from pushing myself too hard.

Getting diagnosed

My symptoms were very up and down from then on. I’d have days and weeks where everything was normal, then back to barely being able to walk for several days. This was roughly six years ago. It took nearly two years to get my first diagnosis, an autoimmune disease called Axial Spondyloarthritis. It seemed odd, as it’s a disease that causes arthritis of the spine, and my back wasn’t bothering me at the time. Still, it was a relief because I finally had some answers after going through so much uncertainty while waiting for referrals and many test results.

A year after my first diagnosis, I received another diagnosis, this time Psoriatic Arthritis. This is similar to Axial Spondyloarthritis, but causes arthritis in any joint, along with inflammation of the Synovial lining (the protective layer around the joints) along with enthesitis, inflammation where tendons connect to the bone in the elbows, knees, hands, and feet.

At times, this made walking nearly impossible (likely the cause of my original symptoms). My knees would get so stiff from inflammation that I could barely bend my legs. This caused a lot of mobility issues, and for almost two years, I used a wheelchair outside of the house for anything more than a few steps. The more I walked, the worse the inflammation would get.

I no longer could do the things I use to. As my illness progressed I had to give up music, my boat, skiing, and more.

What it’s like working with a chronic illness

As you can tell, chronic illness and disability have had quite an impact on my personal life over the past six years. In terms of priorities, working and paying the bills rank pretty high. With limited energy, I’ve had to give up most non-essential parts of my life. Still, this has had an impact on how I work.

Even when I was sickest, most people at work were probably unaware. There was a time when I worked from bed for months. Thanks to virtual backgrounds and remote work opportunities, no one knew. Without remote work, I would have had to give up my job or take a disability leave.

Accommodations

There are two approaches when starting work at a new company: disclose your illness or keep it under wraps. I have what’s called an invisible disability, so unless I’m in a wheelchair or using a cane one day, no one can tell that I have a disabling chronic illness. I prefer not to disclose much about my disease to employers or the people I work with; when I have told people, I don’t think they’ve understood the impact it has anyway.

In many countries, you can ask for accommodations without disclosing your exact illness; you just might need a doctor’s note confirming your limitations and required adaptations. In the perfect world, anyone who needs it should be able to get accommodations without much fuss. Remote work was a huge benefit to the disabled community because we no longer had to ask and prove, going through a whole process with HR just to get denied.

I struggle in the mornings and it takes me a long time to get moving comfortably. This makes getting ready for work in the morning a long endeavour. As the day goes on, this improves, but starting work early in the morning isn’t an option for me. I need more time to get going. 9 a.m. is a perfect start time for me most days since I work from home. If I had to commute, I’d have to start work much later.

Here are some accommodations that can benefit anyone, even if they don’t have a disability or chronic illness:

• Work from home

• Flexible start times

• Flexible work schedule

• Quiet work environment

• Ergonomic chairs and desks

• A large monitor

• Trackball mouse, voice-to-text, and other adaptive input devices

• Recorded meetings

• Async work processes

Things I wish others knew about chronically ill workers

More than half of US adults are living with a chronic illness, And that is based on studies by the NHIS that only include ten selected chronic conditions (arthritis, cancer, COPD, heart disease, asthma, diabetes, hepatitis, hypertension, stroke, and weak or failing kidneys).

Chronically ill people want to work: In the US, 78.5% of people with one chronic illness were employed. That number drops to 64.6% for people with two or more chronic illnesses. More would likely work if they were given a chance or some accommodations like reduced hours, a flexible schedule, or remote work.

We’re good at masking our pain: If you ask me how I am, chances are I’ll say I’m having a good day regardless of the pain or fatigue I’m experiencing. We don’t want to complain, and letting you know how we’re doing will unlikely change our day.

Socializing outside of work: It’s not that I don’t want to get to know my colleagues outside of work, but depending on the day, I may have used all of my energy just getting through the work. I’ll typically push myself for on-site and special events, but I may need a few days to recover.

Spoon theory: The spoon theory is a metaphor for describing how much energy a person has available for daily activities and tasks. A task like work might take up 2 or 3 spoons. Someone without a chronic illness might start the day with ten spoons and only spend 2 on work, whereas someone with a chronic illness might only start with 5 and work might take 4 spoons.

Things are constantly changing: I might have been feeling fine yesterday, and I could be in excruciating pain, dealing with high levels of fatigue today. How I’m doing can change multiple times throughout the day.

We work hard: I work hard because I don’t know how I will feel from day to day, but chances are tomorrow will just be more of the same. A healthy person might take a sick day, but for us, putting things off until we feel better isn’t usually an option.

We’re problem solvers: When you have a chronic illness or disability, you must overcome obstacles daily. Many towns and buildings are not wheelchair accessible. Dexterity issues, memory challenges, and limited energy mean we have to be efficient, come up with creative solutions, and leverage assistive technology or devices to help us accomplish our daily tasks.

We can have lots of medical appointments: A boss once told me I had to schedule my medical appointments after business hours, but he’s clearly never had to book an appointment with a specialist a year in advance. In most cases, you don’t get to pick your appointment, and chances are it will be during the work day. If I miss it, it could be months before I can get another one, or I could be de-rostered and have to wait years. So, no, we can’t just reschedule it.

Brain fog: Pro-inflammatory cytokines in our body (proteins that help tell our immune system what to do) can also cause cognitive impairments, impacting motor control, mood, and the ability to focus for long periods. We may need extra breaks or have a flexible schedule to compensate.

My life post-diagnosis

The life I lived before my illness just isn’t possible now. Despite trying, I can’t even do 50% of what I used to in a week, even while on the proper medications and treatment plan. Just the demands of the essentials like a job, family, and house can sometimes be too much. Add in all the medical appointments, tests and follow-ups, and I don’t have as much energy as I used to.

I’m on medication that helps, but I still can’t play guitar or drums. I am more prone to injury, and take a lot longer to recover from over-exertion, infections or viruses. Recently, I took a week off work to build our garage, and weeks later, I am still dealing with an arthritis flareup in multiple joints as a result.

I have learned to pace myself better and live within my new limitations. It’s hard because life demands more than I can give most days. In the future, I may have to cut back my hours or stop working a ‘regular’ job. Forty hours a week is a lot when you’re chronically ill, and at some point, I’d like to have more of a life outside of work again.