I recently finished Lean In, an inspiring call for girls to become business leaders by Facebook COO Sheryl Sandberg. As a woman in the technology industry, I see firsthand the absence of women – not just in leadership roles, but in the whole field. Generally, the women that I do meet are not leading, but are filling secretarial or HR positions. So I absolutely encourage everyone to read this book and consider encouraging the girls and women in your life to believe in their potential as leaders.
BUT, that’s not why I’m writing this post. I’m writing because as I read Sheryl’s insistence that workplaces need to make better efforts to accommodate pregnant women and new moms, or that women shouldn’t just drop out of the workforce the minute they become – or are thinking about becoming – pregnant, I couldn’t help but seeing the parallels to people struggling with chronic disease or disability.
So, I would like to encourage not just women and girls to Lean In, but all of us struggling with disease, disability, fatigue or depression to Lean In as well.
When I was first diagnosed with Rheumatoid Autoimmune Disease (Rheumatoid Arthritis), I read some stark and discouraging statistics. Headlines in the Huffington Post screamed “Rheumatoid Arthritis Unemployment: 1 In 5 With Disease Stop Working 2 Years After Diagnosis.” The Mayo Clinic goes on to pronounce that within five years, that number becomes 1 in 3. While medication is beginning to change this trend by allowing RAers to avoid severe disability and maintain their jobs, I think we need to take a hard look at these numbers and encourage more accommodations in the workplace and more “leaning in” from those struggling with RA.
Of course, early unemployment does not just effect those with RA or autoimmune diseases. The U.S. Department of Labor says people with disabilities are more than twice as likely to be unemployed and only about 20 percent of those with disabilities (versus nearly 70 percent without) are participating in the labor force at all.
This is a shame because people with chronic diseases are more likely to suffer from depression (and vice versa), and losing your sense of purpose through career can add to that likeliness. A career can take you out of the job of being sick and distract you, reminding you that there is way more to life than being a patient.
So, here’s what I want to see a la Sheryl Sandberg:
- Unless there is no other option, people are often discouraged to share their disease or disability with their employer. The thinking goes, your employer will be more likely to think you’re not up to a given task, and more likely to fire you or pass you over for a promotion. Employers need to be more open with employees, and be willing to have these tough conversations and make appropriate accommodations that allow people with disease of disability to thrive at work still. This could mean later starts in the morning, more flexibility on hours to accommodate doctor’s appointments, extra tools in the workplace to aid those with disability or chronic pain, more breaks during the day to reset, better mental health and wellness programs… Whatever it means for the individual, it needs to be a conversation that can take place without fear of losing ones job or professional potential. (Reminds me of the ladies who are scared to share with employers that they might want to have a family one day.)
- When diagnosed with a chronic disease or disability, you suddenly find yourself with an extra job (sort of like parenthood, but, in this case, you didn’t want it at all). This new job could be full or part time depending on the severity of your situation. Either way, it is difficult to find yourself suddenly trying to manage this new job and your old one. You may find yourself sacrificing projects, hours or quality at work to deal with your new “job”. You suddenly have doctor’s appointments, long calls with insurance companies and need more time to do everything… Without owning up to your situation and having understanding about it from your employer, it’s hard to balance this without suddenly appearing more flaky.
- We need to change the culture of shame that surrounds chronic disease (including mental disease) and disability. As a society, we can not keep blaming people for their disease or depression. We need to stop discouraging sufferers from speaking up about it. We need to encourage people to openly seek help and thrive. The pink ribbon campaign has done a great job starting the conversation on breast cancer and encouraging those suffering from it to share their stories and their families to openly support them. Let’s do the same for the 23.5 million (or 50 million according to AARDA) in the U.S. suffering from autoimmune diseases, the 14.8 million Americans suffering from major depression (and many millions more suffering from general depression or anxiety disorders), and the 50 million Americans living with disabilities.
Got any thoughts on how else we could help people with chronic disease and disabilities stay in the workplace? I’d love to hear them!
It’s not a cure, but a better way to manage pain could certainly change the lives of millions of people.
Supplements have seemingly been in the news a lot lately, and not for their curative powers. As someone who takes many supplements, especially the doc and naturopath recommended fish oil, this article’s worth a read.
NYTimes: What’s in Your Fish Oil Supplements?
I have running on the brain.
This is probably not the best thing to be thinking about, as I promised myself that due to last year’s Chilblains, this year, I would take a break from running in the cold. Well, guess what, it’s January and it’s cold, but I want to run! And no, the treadmill just doesn’t cut it for me.
The weather was nice this weekend, so I went for a gorgeous run on the mesa. The only problem is that there were still puddles and a bit of snow coverage.
Anyway, I think that run, combined with two days of skiing prior and one day of wearing my favorite, not-so-comfy boots post-run (But they’re vintage!! How can I say no to them when they stare at me from the closet that way?) was the perfect Chilblains trifecta. Sure enough, my toes are painful, swollen, itchy, red and purple.
It hasn’t stopped me from wanting to run however, it’s just getting me dreaming of warm runs and destination races. And in my daydreaming, I am imagining crossing the finish line on my second marathon. This time sub 4:30.
I’ve been looking, and the Medoc Marathon sounds like a blast. A run through French vineyards with wine and cheese served at water stops? Mais oui, s’il vous plait.
Is anyone else planning a big race for 2014? Has anyone done the Medoc? And most of all, anyone out there a runner with bad circulation and/or Chilblains who has advice that doesn’t involve the treadmill? Merci beaucoup!
NYTimes: Ask Well: Is Jogging Bad for Older People?
First off – happy holidays! I hope you survived, relaxed, and were mostly pain free.
I know the holidays with RA or other chronic conditions can be tough. Stress levels rise and activities are demanding. Our carefully tailored diets take a hit. The demands on hands are endless – gifts to wrap and open, jars, wine and champagne bottles that need tending to. Fatigue that hits when you least want it to…
All in all, I’m happy to say that my holidays were pretty good. Compared to some of the flares I’ve had recently, I was rather pain free.
As the new year approaches, I’ve been thinking about resolutions. Last year, being pretty new to my RA diagnosis, I was full of resolutions about how to keep my life and conquer RA. My resolutions were bold, but I’m happy to say I achieved a few big ones. I ran a marathon, I wrote a book, I donated 11 inches of hair that had been the same long style for nearly a decade.
Perhaps the boldest thing I did in 2013 was admit to others outside my closest inner circle that I have RA. It may not sound like much, but that was scary and very liberating. It took some time, but it means that I’m now not ashamed to admit that I have RA. Sure, I’m not shouting it from the rooftops, but if you ask, I’ll talk to you about it; if it’s relevant, I’ll bring it up.
So with all that progress, what are my goals for 2014?
It just so happens that the resolutions are similar. I’d like to run a marathon, or at least a half marathon, in 2014. This time, it’s not because I want to prove RA can’t stop me, but because having that goal, doing those training runs, and crossing that finish line made me feel powerful. As I enter 2014 with far more symptoms than I thought I’d have at this point, empowerment is something I know that I need. If not a marathon, than perhaps a triathlon of some length. Either way, 2014 will mean choosing a race and training.
I’d like to write another book. I’d like to do yoga more and learn how to meditate. I’d like to be even more bold and do the Run for Arthritis. I want to travel more. Most of all, I want – and let’s put it down in writing so that I remember – to not resign to RA, to pain, to drug regimens, or to feeling different or incapable.
My rad life is about much more than all that. It’s about big goals and big dreams. Not because of, not in spite of, but just in order to live life to the fullest. And that’s what I plan to do.
So cheers to an exciting, adventurous, big year. I wish all of you the best possible 2014.
When I first got on medication for RA, I took my methotrexate the day it was prescribed (at one of the most depressing and sober happy hours I’ve ever been to) and my Enbrel as soon as it was approved by insurance and shipped to me. I was so desperate for relief, I didn’t think about what day of the week would be most convenient to take 8 tiny pills that make me exhausted and slightly nauseous. Or which day would be best to remember to take my shot, meaning I needed to be by my refrigerator with privacy, alcohol swabs and an ice pack.
At any rate, I recently decided to maximize fun by cramming it into a weekly drug-fueled night of excitement on what is already the best night of the week: Monday. Just kidding.
Monday nights for me now consist of trying to get a kick-ass workout in after work – usually weights and hip-hop dancing. The endorphins boost my mood and working out makes me feel powerful. That helps combat the feelings of weakness that go along with being dependent on drugs, the confusion I sometimes feel when I swallow pills that I know are both a cure and poison, and the wimpiness I feel when I cringe giving myself a shot.
After that, I make myself dinner and settle in for a night of relaxing on the couch. This is only made slightly less relaxing by icing my leg while my shot warms up, then giving myself my injection of Enbrel. Dinner is only slightly less appetizing when the second course is 8 pills of methotrexate. I find that eating a lot before and a little after taking my pills helps with the nausea.
I also find that some good, distracting TV helps.
Anyway, that’s my drug day routine. What’s yours? What makes it more tolerable for you?
Also, for those of you that made it through my drug day rant, I have an Enbrel PSA: according to one of the Enbrel support nurses, the FDA has now approved Enbrel to be unrefrigerated (stored at room temperature) for up to 14 days. The only caveat is, once you take it out of refrigeration, it should remain out and must be used within 14 days. For anyone who’s tried traveling with Enbrel (especially on long overseas flights after FAA regulations no longer allow flight attendants to store passenger drugs in refrigerators), this is awesome news.
I was trying to find the post with my Enbrel travel story, but I either never typed it or it’s poorly tagged. I’ll tell it quickly here. When I was flying to Spain I had to take a three hour domestic flight, followed by a four-hour layover in Miami, an 8+ hour flight, a taxi ride, and not being let into our apartment for two extra hours. Needless to say, my ice pack thawed during my layover and my Enbrel travel case was soaked.
This meant tracking down plastic bags of ice in Miami. The best the flight attendants could do was give me a bucket of ice that turned into a cold, wet bucket of water that inevitably got all my carry-on items wet because it had to be stored under the seat but only fit beneath my feet. In all that travel time, the only place that allowed me to use their refrigerator to store my syringes of Enbrel was the cafe in Spain where we killed time. After that fun experience, this news is VERY WELCOME.