My daily schedule was too much for my body to manage, yet I kept going at the expense of my mental and physical well-being. For years, I forced my body to be ready to move quickly when it needed more time.
Fatigue hit me at the most inopportune moments, like during a workshop I was leading for teachers, or worse, in a lesson with students. Once, in a small meeting with the principal and a few teachers, I drifted off momentarily due to intense fatigue during a flare. That’s how I was “voluntold” to lead a committee no one wanted.
The constant pain I felt in the background made it tough to do my job the way I wanted. I put aside my plans to become a school administrator. I feared I could not meet the demands of the position. My rheumatoid arthritis was dictating my life plans.
A Day in My Old Life
A typical day started with the blast of that dreaded bedside alarm at 4:40 am. I struggled in pain as I shuffled my stiff body to the bathroom to take a shower and get ready for work. Some mornings as I got dressed, I cried over the frustrations of a zipper or the pain of fastening a hook. My wardrobe shifted from items with buttons to pull-on slacks and from strappy wedges to orthopedic flats.
Before RA, it took me 30 to 45 minutes to get ready and out the door each morning. Once RA entered my life, that time increased to an hour and 30 minutes. Stop-and-go traffic on highways caused throbbing ankles, elbows, and fingers — all of which made that 45-minute drive more painful.
Nearly every day was packed tightly with math lessons, staff meetings, or professional development workshops or meetings I facilitated before and after school. I led workshops into the evening and then made the long drive home utterly exhausted. Cook dinner? With what energy? It all came to a breaking point multiple times over the years, but I ignored my body as it shouted to stop and rest.
Is Quitting an Option?
According to a study published in the Annals of The Rheumatic Diseases, about one-third of people diagnosed with rheumatoid arthritis quit working within five years of their diagnosis. Some quit because the job becomes too physically demanding. For some, the constant pain or lack of mobility makes it impossible to continue performing the same tasks prior to their illness. For many others, quitting is not an option. Despite the chronic pain, swelling, and fatigue, many need to keep working.
Personally, I continued working for a few key reasons.
- I liked my job and my coworkers.
- My salary helped pay the bills.
- I needed to distract myself from the stiffness and pain.
- If I quit, it felt like I was giving up and letting RA win.
I thought if I stopped working and stayed home, I’d become too sedentary and I’d become isolated. I thought it would cause too much of a financial hardship. Simply thinking about changing my job to lessen stress caused immense stress.
I began to think about other options for working from home and, in time, I accepted that I would not advance into a leadership position that required more than I could give. A leadership position would require being in top form from early hours into late evening hours. Many people with rheumatoid arthritis continue working in physically demanding positions, and it’s possible those people have a treatment plan that works well. If not, they may be struggling with severe pain every day as I did for years.
By 2019, I was eight years into dealing with RA without an effective treatment plan. The biologics I had tried, along with other meds and diet changes, had not significantly minimized my pain, stiffness, and fatigue. Never underestimate the power of stress.
Minimizing stress — even in the smallest ways — can make a difference in how you feel.
I considered flexible work options for years, but I always stopped shy of leaving the education world. When I had to make a big move out of Florida, it forced me to make giant changes.
If I had not moved, I probably would have made some of these same changes, just not as soon. Moving meant finding a new job and starting over. This became my opportunity to open a new chapter working from home. Not having to rush frantically to get to a job that ran at a constant 90 miles per hour makes such a difference in how I feel.
Doing contract work at home allows me to move at my own pace and it gives my joints the time they need to get going. I’ve never felt better. Between work and volunteering, I stay busy but self-care is prioritized over work.
Benefits of Working from Home
For me, the benefits of working from home with flexible hours outweigh working in person full-time on a rigid schedule.
- There is less chance of me contracting a virus that could make me very ill.
- I have easy access to my heating pads, ice packs, flexible seating, TENS unit, blankets, and other items that support me when I’m in pain.
- I have easy access to privacy for online or telehealth appointments with my doctors.
- I have flexibility in when I wake up and start moving. If I am having a really rough day, I don’t need to call in sick; I can adjust my hours.
- I can prep dinner while on a break when I’m feeling my best. Contemplating what to eat for dinner and preparing the meal does not become stressful or result in getting takeout as often.
- I’m much more relaxed and less stressed being in comfortable clothes in my own home. Professional attire hurts to wear sometimes, so living in shorts or sweats is an advantage. Plus, not having to do full makeup and hair truly prevents unnecessary pain and swelling in my joints.
- I can take a break to exercise or take a short nap when needed.
- I can ease anxiety by pausing to play with my dogs outside or sit with my cat while I work.
- Having side effects like stomach issues, headaches, and nausea are often best dealt with at home.
Improving Your Work Life
How can you improve your work life if you cannot work from home?
- Inquire about implementing a hybrid arrangement where you could work from home two to three days per week. According to The Survey of Working Arrangements and Attitudes, “employer plans for WFH post-COVID are between 2.3 and 2.4 days per week (for persons able to work from home) and stabilizing,”
- Consult a physical therapist or occupational therapist for ideas of workplace accommodations.
- Are there accommodations you can ask for that would improve how you can work with less pain? Engage in the interactive process with your employer.
- Speak with the Human Resources department about the process for getting reasonable accommodations.
- Is there another job opportunity that could better meet your needs?
- Consider how you could minimize stress in your current work situation. Do you really need to bring that work home or can it wait? Are you taking on too much at once?
Knowing Your Rights
You have rights and employers have responsibilities to meet your needs. Employers are required to make reasonable accommodations in the workplace. Afraid of making waves? Then it might be time to consider a new employer that values you for who you are. It might hurt emotionally and it won’t be easy but letting go and finding something new and better can make a huge difference in managing your chronic illness. Find a work situation where you are seen for your ability and not as a liability because of your disability.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.