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Learning to Advocate for Myself in the Workplace With Rheumatoid Arthritis

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When I was diagnosed with rheumatoid arthritis over 20 years ago, I was told I was lucky because they caught it early. After suffering for months with swollen joints and extreme fatigue, I was excited to think that my life would go back to “normal.” I was very wrong.

Not long after my diagnosis, I got my dream job. It was advertised as having flexible hours and the ability to work independently. But what I didn’t know was that my new boss lived for work, had boundless energy, and expected that from her team. Self-care was not in her vocabulary. The schedule was odd too. We were expected to be in the office at 9 a.m. and were “allowed” to take time off during the afternoons “if” we had a night meeting in the field. We had three to four of those meetings a week, often lasting until 9 p.m.

Working full-time was an extreme challenge. Everything I read told me not to disclose my illness, that it could make supervisors question my abilities, prevent promotions, and just make people feel uncomfortable. I felt I was keeping this big secret about myself. Yet, I didn’t realize the extra energy I needed to act like everyone else. I didn’t resent it either, I just put on my mask in order to be accepted. I pretended to my boss, my colleagues, and myself that I was the same person I was before my diagnosis. I worked as hard as ever and said nothing about my personal struggle. It took me an hour each morning to loosen fingers before I could hold a pen. My swollen feet now fit shoes two sizes larger than before. I was in pain, scared, and exhausted. It was a constant fog of fatigue. None of my colleagues knew that it took every ounce of energy to produce at work and pretend I was fine. I had nothing left for my personal life.

After a year, I had become so frustrated that I told my boss about my RA. I explained how stress and extended work hours exhausted me and made me more vulnerable to flare-ups. She looked at me as though I was speaking a foreign language! She suggested I might take a nap before my evening meeting and get more rest on the weekends! I could have tried to go to Human Resources for help and support, but I had already heard how notoriously unhelpful they were to others, so I didn’t want to chance it.

Over time, I continued to try to advocate for myself, suggesting working one day a week from home. That idea was met with “how can I know you’re really working”? I also asked if I could come in later in the day after an evening meeting, again the answer was “people will think you’re taking advantage”!

After a few years of this, my body had enough. I contracted shingles, was put on short-term disability, and told not to work for six weeks. As my body recovered, I slept often and journaled about what I wanted in life and a job. I realized that I hadn’t felt restored and calm since I began this position! I was blaming myself that I wasn’t like “healthy” people. Fortunately, I came to understand that I was in a toxic environment that did not recognize the needs of the employees. Most managers valued employee productivity over the employee. Since my boss put work above everything else, she couldn’t and wouldn’t empathize with anyone struggling. She didn’t advocate for herself, therefore she had no idea how to advocate for me.

I started reaching out to friends I knew that had other chronic illnesses. Even though they didn’t have rheumatoid arthritis, they could relate to the fear and isolation that come with chronic illness. We keep our struggles to ourselves for many reasons and feel like we don’t fit in. But, after connecting with those who shared my challenges, I finally felt validated, encouraged, and understood. I found I didn’t appreciate all the positive qualities I have, and had forgotten that I was really good at my job! I had so many skills I could share with an organization, and had a unique experience that no one else had. I was a valuable asset that any employer should feel grateful for.

Finally, I felt confident enough to submit my resignation. I had tried everything I could to educate my boss on my needs and see me as an individual. I put myself first and many people there could not relate to it. Thankfully, I was able to find a job and supervisor that appreciated me as an individual. I have never regretted it.

I’m not saying that every job I have had since has given me all that I needed. But I learned that staying connected to others who can empathize, accepting my resilient body, and not taking responsibility for others’ ableism helps me to live the life I want. I now know my worth and appreciate what I need from an employer. It’s still a struggle since ableism is so strong in many work environments. But I will no longer accept less than I deserve. I am learning to be my own advocate and I hope by sharing my experience and my truth, I can advocate for others.

Getty image by Tom Werner.

Originally published: March 6, 2022
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