Can I continue working with a chronic illness?
When you are newly diagnosed with an autoimmune disease or any chronic illness, many things change in your life. First of all, you probably aren’t feeling your best. There are doctor appointments, insurance companies to call, and medical tests to complete. You may be trying new medications that cause side effects you didn’t expect.
As if that isn’t enough, you are trying to juggle your career, work, home, and family. So I think it’s safe to say your stress level is high and your energy level is low.
Working with a chronic illness is a journey, not a destination
After receiving your diagnosis, you begin the medical side of your journey, but nobody really talks about the career side and working with a chronic illness part of your journey. That’s why this series on working with chronic illness is so important. So, let’s begin our journey.
“Life is a journey, not a destination.”
― Ralph Waldo Emerson
A chronic illness such as an autoimmune disease is defined differently depending on the source. However, it generally means that you have a long-term condition with no cure, but treatment and lifestyle changes may help you manage your day-to-day activities. The statement “long-term illness with no cure” is not something you ever wanted to hear and most likely throws a wrench into your career plans.
Once you receive a diagnosis, you may need to evaluate your options for managing to work with chronic illness. But, before you throw the proverbial wrench in the air and quit your job, take time to process what’s happening, evaluate your choices and decide upon a course of action for this season in your life.
Take time to process and prepare for the changing seasons
When I was first diagnosed with an autoimmune disease, I didn’t realize all the changes and new things happening in my life. So I tried to maintain the same lifestyle and simply add on the chronic illness on top. It was as if the seasons were changing, but I didn’t change my clothing. Imagine if you went through winter, spring and summer without changing your clothes from warm sweaters and parkas to no coats, shorts, and tank tops. You wouldn’t be very comfortable wearing your parka in July!
To summarize, you can’t just add a chronic illness or an autoimmune disease on top of your life and expect everything to be the same. So take the time to process and prepare for a changing season of your life.
Unfortunately, I did not take the time to process and prepare for working with a chronic illness. Instead, I just pressed on trying to wear the same winter parka in the summer.
How to avoid bursting from the pressure
Another way to think about the new changes in your life comes from the Bible when Jesus spoke of putting new wine into old wineskins.
“And no one puts new wine into old wineskins. For the old skins would burst from the pressure, spilling the wine and ruining the skins. New wine is stored in new wineskins so that both are preserved.” –Matthew 9:17 NLT
Again, just like wearing your winter parka in the summer, you wouldn’t put new wine (a new life-changing diagnosis) into old skins (your current lifestyle) because the old skins would burst from the pressure, spilling the wine and ruining the skins.
Why things may get worse before they get better
My employer was very understanding and allowed me to attend physical therapy and all my appointments. Take as much time as you need, they said! Yay – how cool, I thought! The only problem was that they didn’t lessen my workload. Soon, I realized that going to physical therapy three times a week caused me to get so behind in my work that I would take work home and work on the weekends. Again, high stress and no rest.
As I began treatment for my condition, my condition worsened before it got better, which is typical for scleroderma. As a result, work became more and more difficult. Finally, I couldn’t manage anymore, so without processing or preparing for new wine, I burst and requested a leave of absence.
Why it’s important to be self-compassionate
First and foremost, know that individuals with chronic illnesses face many challenges around life, family, career, and work that need to be addressed and processed with self-compassion.
Self-compassionate people recognize that being imperfect, failing, and experiencing life difficulties are inevitable, so they tend to be gentle with themselves when confronted with painful experiences rather than getting angry when life falls short of set ideals.
-Dr. Kristin Neff, The Three Elements of Self-Compassion
I felt tremendous guilt and shame for stopping my career abruptly, even for a short time. I had worked since I was 16 years old, and my identity was tied up in my career and work. The abrupt stop without processing, preparation, and plan made me feel full of shame, guilt, and worthless. Those feelings and the disease attacking my body caused me to hide in my house for the first six months of my leave. I avoided friends, co-workers, and neighbors who wanted to check on me. I was embarrassed to admit that I failed (my thoughts) and couldn’t work.
Prepare a plan of action by thinking through all of the possibilities
Take time to think through your choices, evaluate your current situation, and discuss your options with a trusted person. Here are some questions to help you think through your choices and prepare a future plan. Remember, your goal is to feel better and make choices that will benefit you in the long run. Journal your thoughts on all of the questions below. I have included a downloadable document on which you can print and write your answers.
- How much stress does my current work cause me?
- How well do I manage stress?
- How much fatigue am I experiencing?
- Do I need to take a nap or lie down during the day?
- Do I have pain that makes it difficult to sit or stand for long periods?
- If your work is physical in nature, will I have the strength to do my job?
- Is it difficult to get up and get ready for work every day?
- How long is my commute to work?
- Will the cold bother me in the office or during my commute, depending on my climate?
- Will I need special accommodations to work in the office, factory, or place of business?
- Is my company able to accommodate my requirements?
- Will my current employer reduce my workload and allow me to reduce my hours?
- What is my company’s culture?
- How has my company dealt with employees in similar situations before?
- Does my doctor think I need to adjust my work schedule or load?
- Do I have support from my closest family members to help me more around the house while I work?
- Does my family, spouse, or partner support me by working fewer hours or in taking a break?
- Will a reduction in hours or a break in work affect my financial situation? Can I manage a change in my income?
- Will my employer, consider allowing me to work from home for all or part of the week?
- Should I consider taking a new job or position that is less stressful and provides me with the environment I need?
- How long will I need to work reduced hours or take a leave of absence?
I hope these questions will help you think through, evaluate, and prepare for the future. Remember that people with autoimmune and chronic illnesses work successfully in all careers. The key is to position yourself in this new season of life to thrive while working, taking a break from work, or reducing your hours.
What will I do if I stop working or if I take reduced hours
Your final step in processing and preparing your new wine is to think through what you will do if you choose to work fewer hours or choose to stop working during a leave of absence. In my own experience and with speaking with clients, it is easy to feel saddened and even get depressed about a shift in your daily schedule.
Remember, just because you stop or slow down, it doesn’t mean it’s the end.
I want you to be mentally prepared for a significant shift in your schedule, purpose, and daily activities. Remember, you are not going on vacation but instead taking time to feel better, focusing on improving your health and preserving your new wine and new skin.
In your action plan, write down what you can do to help you feel better, rest, and keep up your skills. For example,
- Go to doctor appointments and physical therapy
- Practice self-care with gentle exercise, relaxation, healthy eating, prioritizing sleep, and more. See my post on the How to be healthy in six simple steps.
- Keep my mind active by reading, writing, and journaling.
- Keep my skills up to date.
Embrace the seasons of your life
At the beginning of your diagnosis, you may be at your worst point, and working at your current job is extremely difficult. Whereas a year later, you are feeling better and want to return to your work and career, or maybe you want to reinvent yourself for a new job or type of work.
Change with the seasons of life. Don’t try to stretch a season into a lifetime.
-Unknown
Just like seasons change, so will the course of your illness and your career. Learn to adapt to changing seasons in your life by processing, preparing, and planning, and you will thrive no matter what you choose.
