Changing Jobs for My RA
A little more than 5 years ago, I changed jobs with the hope that it would be my last full-time position (fingers crossed — change happens unexpectedly).
I moved to a job that matched my personal passions and with the hope that it would better support my health and living with rheumatoid arthritis (RA).
A strong work ethic from a young age
From my perspective, work is very personal and intimately connected with health and well-being. From a young age, I was a worker. When I took on a task, I wanted to do it well and excel.
I wanted to give back to my community and be productive. I was well aware of the low expectations of people with disabilities and experienced it myself in many ways while I was growing up.
I aspired to work because I wanted to make a difference.
Work became more complicated
When I actually started working full-time after college, work became more complicated for me.
It wasn’t easy for me to get ready and wear the ‘right’ clothes. It wasn’t easy for me to commute (broken bus ramps, broken elevators for the train, sidewalks without ramps, time and exhaustion of travel).
And, it wasn’t easy to have the stamina to get through the day.
Working through health challenges
I persisted despite RA flares, pain, exhaustion, and accessibility barriers. Sometimes I felt I should get extra credit, but I never did. In fact, I often felt that, throughout my career, I had to work harder than everyone else to get the same recognition.
To be honest, after a while, ‘doing good’ didn’t matter as much as getting paid.
I left my first 2 nonprofit jobs partially because it was hard to cover the rent plus all the other expenses of living with RA and disabilities on those small paychecks. I had to be able to pay for new wheelchairs and repairs, after all.
Then there were doctors' visits and medications, which cost money even with good health insurance. I left the nonprofit world disillusioned and disappointed.
Ableism in the workplace
Working for a trade association improved my paycheck and I could still do good, but it had other costs to the soul.
I remember being in an annual mandatory training (that I attended several times!) about employment practices under the Americans with Disabilities Act.
Prejudiced comments about people with disabilities
I was the only visibly disabled person sitting in my wheelchair. And I may be paranoid, but it felt like the trainer constantly looked at me accusing me of the things she believed about people with disabilities - that they were fakers and lazy, that they could work, but wanted all these "special accommodations," and how the supervisors needed to be tough and not give them these accommodations.
It was an hour of belittling and threats. I kept reminding myself that my manager consistently applauded my work and I shouldn’t believe this incredible spouting of prejudice.
While my immediate colleagues were nothing but supportive, the ablest culture of the organization wore me down until I had to leave for my own well-being.
Thriving at my job, flailing with my health
It was about this time that I was feeling really strongly about wanting to advance my career. I didn’t just want to work - I wanted to excel.
So, I joined a firm and had really fast growth. I worked extremely hard. The hours were long, but the rewards increased with the accomplishments. It felt like a fair trade.
But then, I had a health crisis. I will be forever grateful to have received the support to take about half a year of leave for 2 surgeries on my knee and significant rehab for recovery (although I worked part-time when I was able).
It was a hard journey. It was hard to say what I needed, but I so appreciated the support and to be able to return to a job that I loved.
Success and realization
The sacrifices paid off for everyone — my employer and myself — because I returned more gung-ho than ever to build the business and grow.
The next few years, I did some of my best work and rose to a high level in the company. I was both proud of myself and of being a part of that team.
I needed to maintain any semblance of health
But then the bottom fell out for me. I was exhausted. I just couldn’t keep up the same pace anymore. I had more fatigue, more pain, more frequent bad RA days.
Although I liked the work, I just couldn’t continue and maintain any semblance of health. I needed more manageable hours, but still wanted work that was important to me.
So, I moved to a job where I had a personal passion for the mission and didn’t have to work additional hours on networking and finding new business opportunities. While my line of work is never strictly 9-to-5, it was less demanding of my time.
Doing well while also taking care of myself
I’ve come to realize that I can’t do the standard thing of most workers anymore.
I just don’t have the physical energy and endurance of early rise, suit up, commute, work 8-plus hours, commute, then do all my living (which includes daily physical therapy, treatments, rest, coping with pain, plus time with my husband, family, and friends), sleep, and then do it all over again.
I literally fall apart. I flare. I get pain everywhere. I can’t get out of bed. My body succeeded at faking this role for a few decades, but it has basically drawn the line. I am just not capable of working this way anymore.
Accesible work situations for people with disabilities
We need to reconsider work. Seriously, we must. People like me have value to bring to jobs (I’d like to say all my supervisors would agree). But, we may not be able to do 8 hours in one stretch or come into one location, etc.
We may need more breaks. We may need to focus on the tasks where we can best contribute and really excel. There’s a lot of other ways to make work actually work for people with conditions and disabilities, and also their employers.
I enjoy contributing to my community
I work not just for a paycheck (although my mortgage appreciates it!), but also because I enjoy contributing to my community in this way. Forgive me for my earnestness, but I work because I want to help others and make the world a better place.
Let’s be honest - our world could use a lot of help right now. Perhaps if we invited more people with disabilities into a more welcoming and accessible work situation, we could together get some good stuff done.