Monday, April 14, 2014

Life changes -- RA drives me onto the professional off-ramp

Last week I officially acknowledged what I can no longer do -- my current job. It was announced in my org that I was stepping down from my position as an IT manager. I'll vacate as soon as they hire a successor.

I did this job for ~15 years. But I am no longer the person I once was because of pretty aggressive rheumatoid arthritis (RA), and I've been telling my boss for a couple of years now that a person is needed in this position that can handle the long hours that come with the job. So the succession plan is being rolled out ASAP.

Actually, my rheumatologist and endocrinologist have said for the last 4 years to "get out of that job," because the stress that comes with the ever-demanding and changing world of IT is wholly incompatible with an autoimmune condition that is profoundly affected by stress, the weather, and random foolishness I never can quite figure out. I'm deteriorating faster than I could have imagined. I guess the docs were right. I was in denial.

But those who know me know that I thrived for a long time on stress and long hours (or so I thought I did).

It's part of my own acceptance process to admit that I am not the person that I once was, chugging away on ungodly over-work up to about 3 years ago (doing this job plus running a full-time, nationally recognized blog, traveling during my vacation time to go to press conferences, the White House, covering all sorts of things as a citizen journalist in digital media). It was tiring, wonderful fun.

Fast forward to now -- rheumatoid arthritis has so destroyed me from the inside out that I:

1) can no longer down a 40 hour job;
2) had to shut down my blog;
3) can no longer travel alone because I can't lift my bags and I suffer from extreme fatigue and threats of flare ups from the barometric pressure changes because of flying;
4) live by the clock for meds, sleep breaks and the like; and
5) give up my weekends, taking my RA biologic med, and methotrexate that make me sick as a dog, and doles out unreal fatigue, all sacrificed so I can work the next week.

My spine is also now affected and one of my disks not only re-herniated (L5-S1), but it is collapsing on the other side, affecting feeling in my left leg and foot.

All in just three years. 

My life now revolves around preserving myself for work -- and nothing else of me is left for life. I am one of only a couple of patients of my rheumatologist that is still able to work. It's estimated that as many as one-third of people with RA are forced to stop working within 10 years of being diagnosed. You can read about others' experiences with RA and the workplace here.

Unlike some RA patients on the professional off-ramp, the organization is crafting an accommodation that may allow me to slide over to a different, hopefully more manageable 30 hr/week job. What's definite is that I will no longer be a senior manager. Does this bother me? Actually, I'm in such a constant state of pain and exhaustion that losing that status isn't something I'm mourning. It remains to seen how much of a demotion this new position represents.

In terms of reactions to the change, it's pretty clear that thinking about disability and my need to step down scares many people into silence (after all, it's natural to think "glad it's not me/that could be me" -- it's a very human reaction). Are you supposed to congratulate the person, have a sense of sorrow that they are stepping down for obvious health reasons? There is no good way to react. It was kind of like the interesting reactions I encountered during the couple of days I lost my voice due to a med change ("People -- I can't speak, but that doesn't mean I can't hear or think..."):
"[T]his temporary situation shows just how ill-prepared the average person is to deal with a disability of this nature. Our ability to speak allows us to convey a lot of information in very few words. Body language (thumbs up, down, OK gesture), is pretty limited when you need to communicate detailed thoughts or nuances.
Those who can communicate vocally assert their privilege/ability to try to force the mute to communicate on their level even when logically they know the other person cannot speak. You can see the frustration on their faces; they'd rather avoid me rather than try to compensate for the communication delay. Well, of course -- a pad and pen is a poor substitute.  I've also had to whisper from time to time because of my frustration in moving conversations along so I can get back to work. They don't want me to break my vocal rest, mind you, they just don't know what to do, so they avoid."
What I cannot avoid

Emotionally, I'm not really able to celebrate anything, since some things are still up in the air. But honestly, I'm still having those feelings of "Dead woman walking" or that I represent "the old dog taken out back and shot in the head." Pick your poison of negativity. It's all normal feelings I've had over the last week, and I just have to work through it. I do take solace in that I know that I'm not alone; this is a story that has played out (with even worse circumstances and resolutions) for most patients with severe RA. It's the netherworld prior to full disability -- too sick to work full time, not sick enough to qualify for disability. It's a high bar to clear. Besides, in my case I, want to work. And just be able to exit with dignity when the time comes. That option usually doesn't happen for most. Many simply have to resign.

It's horrible to know that I have a professional expiration date that isn't long in the future. Even something as simple as writing longhand is excruciating. I have to wrap my hands (and now my thumbs too) each AM, to tolerate typing all day. If I lose that ability, I don't know how I'll adjust. I detested using Dragon Naturally Speaking when I tested it. I think so much faster through my hands; when the day comes and I cannot type, it will be a real crossroads.

Part of me wants to flee and leave it all for someone else to deal with rather than exist being less than whole and involuntarily on a professional off-ramp at 50.

But I live in the real world. I just have to stay healthy enough to make it through the fire of a long list of to-dos to pass the torch to the next IT manager.

And figure out how I'll be able to make it to the next Journey concert when they hit Raleigh (on a weeknight, no less. I'm usually in bed by 7PM these days). I'll really pay dearly in terms of fatigue, but I need something to feel positive about right about now. I'm still holding out on buying tix because of the health circumstances, so I guess I won't get good-for-photos seats now. Sigh. Ah, just think Anything is Possible.

Some additional reading for those out there in similar situations:
In one recent survey of people with RA, researchers found that over a three-month period, employees with rheumatoid arthritis took off an average of two to three weeks from work. In an earlier study, researchers noted that many employees with RA not only altered their working hours but also either changed their job or pursued a different career altogether. 
According to Pope, the newer medicines for rheumatoid arthritis seem to work best for employees who have been diagnosed for less than 10 years and don't have joint deformities. But medication isn't the only factor. Pope says that age, occupation, education level, and duration of the disease are all predictors of work disability among people with rheumatoid arthritis. 
...Your right to have accommodations made for you is protected by law. The Americans with Disabilities Act (ADA) protects employees from discrimination based on their disability. Federal law defines a disability as a physical or mental impairment that limits a major life activity. It prohibits employers from: 
* not making reasonable accommodations to the known physical or mental limitations of disabled employees
* not advancing employees with disabilities in the business
* not providing needed accommodations in training
"People working with RA experience pain when they type, fatigue while traveling, and stiffness as they drive to and from work," says Nadera J. Sweiss, MD, rheumatologist at the University of Chicago Medical Center. You may also feel guilty and worry that you're not working hard enough, she says. 
Unfortunately, too many people with RA are afraid to speak up and ask for help to find ways they can stay productive. So they become frustrated and resign.
But it doesn't have to be that way. 
...If your rheumatoid arthritis and employment no longer seem compatible, here's a checklist to help you exhaust all your resources: 
Have you told anyone at work about your condition? "I recommend people with RA talk to their supervisors about the disease," Britton says. Depending on your situation, you may want to talk with some of your coworkers, too. 
"There are so many people who hear 'rheumatoid arthritis' and think it's the same as osteoarthritis. They don't realize it's a serious autoimmune disease that affects the joints, heart, and lungs," she says. The better people understand the disease, the more willing they will be to offer workplace accommodations.

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