Hard Conversations: When Rheumatoid Arthritis Affects Your Work
"Can you work at all?"
I was in the middle of my two weeks off to heal, hadn't shown any signs of healing yet and was talking to a friend about how I felt, sharing my worries about what it meant for afterwards. For when I went back to work. And that's when she asked that question and in so doing, was the first to mention the elephant in the room. Because this injury was big, it wasn't getting better and it felt as if just looking at my computer made the pain worse. And if I, who make my living writing, couldn't be at my computer, well...
Even today, over a month later, it's hard to write about.
Work means so much. It means you're well enough to have a job, it means you're contributing, being part of the world. It means a paycheck, contact with other adults, being of use. And being at the point where you have to strip off the blinders, look at the cold reality that maybe you've reached the point where you have to give up, have to admit that you're done? In the understatement of the century, I referred to it as not a fun moment, but what it really felt like was a sort of death. And I was not ready to let this part of my life go.
So I thought some more. Took a deep breath and a stepped into that cold and scary place of being completely and utterly honest with myself, taking a look at what I do and how my body felt. And realized that I could suck it up, keep pushing myself, keep going at my normal pace, but that it would pretty much guarantee I'd be incapable of working at all in a very short time. On the other hand, I could face my demons and admit to myself and others that I was up against a brick wall of Can't, that I have a chronic illness and it means needing to find different ways of doing things. I took a long, hard look at it and decided to ask for help. From my doctor, from my family and friends and from my boss because doing so, asking for and receiving help in the healing process would in the long term mean I could continue to work and continue living my life, instead of being trapped by the pain.
I went to my doctor, got a prescription for some good painkillers and a steroid shot in my shoulder that felt as if I was being bathed in cream. Then asked family and friends to help me remember to slow down - I respond well to guilt - and then came the really scary moment. Because how do you approach your boss to talk about the wall of Can't without feeling as if your job is in jeopardy? The Americans with Disabilities Act and its requirements for employers to accommodate people with disabilities doesn't matter, there is still that fear: will this mean losing my job? And I'm lucky. I work for HealthCentral where they understand how illness and disability can affect all aspects of your life and we found a different way for me to do the job.
But it's not enough. No amount of medication, no amount of loving nagging and shoulder massages and no amount of accommodation at work will help me unless I help myself. There needs to be radical changes, long-term changes or I will be in this exact position over and over again and the more times it happens, the greater the risk of permanent damage. I have to change the cause, not the symptom and that means changing the way I work, the way I live and the way I think about my body, because if I don't stand up for my body, it won't do what I need it to do. Protecting myself now means I'm protecting my future - not just the next month or two, but the rest of my life.
So, I can hear you asking, how's that going for you? And I'm probably not imagining the slightly exasperated tone, because you know how I tend to ignore my limits
I'm learning to single task and reminding myself that although I don't get as much done in a day, doing less allows me to do more in the long run, because I don't need to take several days a week to sit and whimper. When I'm not working, I feel vaguely guilty, but instead of the bad feeling of guilt, it's in that delicious, playing hooky kind of way. And when I'm working, I feel vaguely guilty that I'm not resting, which is a new experience for me and a very odd one at that. I still get lost in work, get carried away and spend too much time doing, which is teaching me all the different ways I need to set my timer for 30 minutes when I'm at the computer - not just when I'm here, on the site, not just when I'm writing, but also when surfing, editing photos, e-mailing, etc., etc. Luckily - and this is a very perverse kind of luck - my shoulder will often remind me how bad things are and I'm getting better at listening to it before it starts screaming.
I'm learning to give myself permission to stop, to not do. Because I finally faced the fact that if I don't, I will be forced to stop entirely. And who has time for that?
If you need to approach your boss about changing the way you work, check out my post on working and RA, as well as the Job Accommodation Network for examples of accommodations that may be useful to you. They also have staff available that can help you develop a strategy to negotiate with your boss.
You can read more of Lene's writing on The Seated View.