Last week, a client, “E”, wrote an email telling me how difficult it is to “.. have your life so controlled by insurance as it is for so many like us (living with chronic illness). I’m disappointed it determines so much of my joy. And my son will determine where he will work based on who will cover his colitis meds.”
E was referring to The New York Times, Shifting Careers article, written by Marci Alboher, “Working While Chronically Ill” . In it, I was quoted as crediting my ability to make the career changes that I did to being able to rely on my husband’s health insurance policy that covered our family.
I’ve been fortunate that my husband’s jobs have always offered group policies with good health coverage to our family. But that hasn’t stopped me from worrying about losing that option.
This illness taught me loud and clearly that the unexpected happens. I’ve always felt deeply that chronic illness leaves me a more vulnerable person.
When I became ill with multiple sclerosis (MS) almost 30 years ago, a short disability leave made MS part of my documented health history. Purchasing reasonable private health insurance (forget disability or life insurance! became impossible. The only options open to me were group policies through a job.
Healthcare insurance went from being off my radar screen to high priority. Even if we chose not to take the coverage in my job, I wanted the choice. Just in case.
E reminded me that so many continue to feel vulnerable and dependent on employment for getting the health care they need. There are many reasons why good medical care is expensive. I wouldn’t presume to offer ideas about how to change this system that’s so broken.
But I think it’s terribly wrong that people, particularly those with chronic illness who rely so heavily on this system, have to make employment decisions based on healthcare options. It can’t be good for anyone’s health – employers or employees. Check out this article in the New York Times (Insured But Unprotected).
This clearly isn’t working well enough for too many who need it.
How about you?
When I read a blog post (Fibromyalgia Negative Press) – citing a newspaper columnist’s remark about people with Fibro who want to collect a government check and pop pills (Random Nonsense ) — I thought: I’m glad I live with multiple sclerosis!
After several weeks of deep pain and fatigue, I’m actually grateful to live with a disease that people believe exists. I mean, I could have fibromyalgia or CFS! Not only would I have these miserable symptoms but people would doubt me. Worse they might label me lazy or crazy.
When I told my neurologist about the recent “flare” in symptoms, she suggested an MRI to see if there might be new MS activity. Because it’s MS and there are tests that show disease, I can be confident that my healthcare providers all agree on this point.
But my client withfFibromyalgia, who is a senior executive, finds that although her rheumatology doctor fully supports her, her other physicians seem sceptical about the diagnosis. And she never mentions it to her colleagues because of the odd reactions she’s gotten.
I’m tired of the demeaning remarks about people with Fibromyalgia. The common thinking is that this isn’t a ‘real illness’. I’ve heard all kinds of people say that fibromyalgia people are depressed, difficult, even a little crazy. I’ve heard healthcare professionals say that Fibro patients are their toughest. Others say that there’s a “Fibro” type who doesn’t seem to want to help her/him self.
What’s up with this? Maybe it’s a chicken and egg thing. If you haven’t lived with invisible, unpredictable and waxing & waning chronic illness -pain, fatigue, mental issues – you don’t know how crazy making it can make even the sanest person.
When I’m not well, I’m not the same person that I am when I am well (just ask my husband, my kids, the people who work for me!). When I have symptoms that don’t improve quickly, I can lose hope and feel depressed. When I see a doctor who tells me that I’m difficult to treat because I don’t get better quickly, I want to scream. I know I become a more irritable and difficult patient.
I imagine I’m better able to manage my responses better than most, due to my training and what I do for a living. But my symptoms derive from ‘recognized’ diseases with objective findings. It would be that much more difficult to confront a world that doesn’t believe my symptoms are “real”.
As it happens, for some completely inexplicable reason (certainly not due to a change in wet weather), I woke up two days ago feeling much better. The back pain is still there but improving and the fatigue and heaviness are gone. I’m grateful both to feel better and to know that no one doubted that my symptoms were due to some underlying disease state. At least, not that they said 
What do you do when you face the sceptic? Have you experienced people at work who think you’re trying to get out of work by “faking” it or making a big deal out of nothing? Or who don’t even believe that what you’re living with is “real”? Share it.
Check out the very useful information in The New York Times, Patient Money column, Protecting Your Job When You Live with Chronic Illness by Lesley Alderman.
And, yes, there are several quotes from me.
On reading this, a client emailed to let me know that she’s worried that now that I’m famous, I wouldn’t have time for her. She said she was joking but it led me to wonder. Could media attention have that effect on my clients or my prospects? People have commented that after viewing my website media page, they’re intimidated and think that I’d be too busy to work with real and sick people.
Please allow me to disabuse you of that fear. If you know me at all, you know that all of my efforts are designed to attract coaching clients because career coaching people with chronic illness is what I love most to do.
The first time I was quoted about disclosure, in The Wall Street Journal, several colleagues commented that this would open the floodgates. Prepare for more clients that I could handle. One suggested that I hire help to field the calls. Over the next year, I got six inquiries into my services who told me they’d heard of me through the WSJ article. Yes, two became clients. Not bad – but not exactly a bursting dam.
Oh, and unless I have prior permission from a client, I try very hard to give the reporter composite examples (as I do here on blog posts). I blend details from different clients so, hopefully, no one could identify him/herself in print. Although I’m not a particularly private person (or I wouldn’t be doing this!), I know that many folks with chronic illness are pretty fussy about their privacy and rightfully so!
Since the WSJ article, I’ve been quoted several times a year in national press. My family and friends are always happy when I send them a link. My mother, in particular, was thrilled as she’d always hoped for at least one of her children to be on the cover of TIME Magazine and this was as close as she got.
Of course, an article will sometimes lead a new client to me. But mostly, I’m delighted because it’s great press for those of us who live with disease that isn’t curable and gets in our way as we struggle to live productive and fruitful lives.
And, if you know me, you know I like concrete outcomes. I like to think that this press achieves two key objectives:
- It gives healthy people a better idea of what people with chronic illness face in the workplace, leaving them better prepared to address chronically ill co-workers.
- It gives chronically ill workers the knowledge that they’re not alone and there are resources to which they can turn.
And for more details like those in the article, my book, Women Work and Autoimmune Disease: Keep Working, Girlfriend! has many more suggestions in Chapter 5, Success in the Workplace.
So, now, if still you’re hesitating to contact me because you think that I’d be too busy to respond or too expensive, try me.
Chronic Illness demands that we stay flexible, like wire coils. If we don’t we can crash and burn, can’t we?
It was 2:00am when I woke with a headache & felt like I was burning with fever. I was convinced it was the H1N1 virus (aka swine flu). As I lay in bed, too tired to do anything, anxiety set in — as it can only do in the middle of the night. My day ahead seemed to me packed from early morning until late day with client appointments and other meetings.
I tried to figure out what could be rescheduled and what couldn’t while lying in the dark.
Finally, I stumbled to the bathroom and found the thermometer. It wasn’t 103 – it was 99. That’s when I remembered that earlier in the day, I’d taken my weekly dose of the drug therapy for Multiple Sclerosis). It’s not unusual for me to have flu-like symptoms for the first 12 hours, especially if the fever reducing pill I take had worn off! Popping a long lasting fever reducing pill this time, I went back to sleep and woke up feeling fine the next morning.
Good news is no illness today and another bullet dodged. But then I realized that worrying about things like swine flu is what “normal and healthy” people do. For the past 30 years, my life, like so many who live with a chronic illness, has required constant attention to any new ailment that might be develop and prevent me from doing what I’d planned.
It’s another reminder that when you live with a chronic illness or syndrome – it doesn’t matter whether it’s autoimmune disease, coronary disease, cancer or chronic pain – your life has the same issues and concerns as healthy people. It’s just that an unpredictable and disabling occurance is more likely to happen to you , isn’t it?
This is where it helps to develop your capacity to stay “light on your toes” , so you can respond to the punches. I describe this resilience in detail in my book, Women Work and Autoimmune Disease: Keep Working, Girlfriend!. That way you can respond to the unexpected and the disappointing without letting it grind you to a halt.
What do you do when the unexpected symptom crops up or gets worse and it means that you can’t meet your obligations?
Share your comments here OR go to the cicoach FB discussion page (you don’t have to be a FB member) and join or start a discussion there.
The ADA – friend or foe?
Do you have a job and live with a chronic illness or condition that leaves you unable to do certain activities? (aka living with disablities?) Do you believe that you are well aware of your rights given by the Americans with Disabilities Act? Are you shaking your head, YES?
Most likely, you’re misinformed.
Just ask any human resource professional. She’ll tell you about the number of employees who come to her office with incorrect ideas about this Federal Act. If she’s honest, she’ll share how most supervisors know even less. And, if she’s really into “letting her hair down”, she’ll tell you that most HR folks are just as clueless about what this piece of legislation actually DOES in a court of law (even with the recent amendments).
The things is that the problem is not that most people don’t know about the ADA. Quite the contrary. Most managers in the workplace have heard enough to quake in their boots when these 3 letters are even mentioned. Clients tell me horror stories of managers who won’t hire or promote a person with chronic illness because they’re worried that somehow, because of the ADA, they could be facing a lawsuit some day.
In a terrific article, Sandy Lahmann describes just this situation: Equal – But not Special. FYI- Sandy was a cicoach.com client who demonstrates what strategic thinking and sheer grit can do. She’s the 2007 winner of the Colorado Ski Country USA’s Adaptive Athlete of the Year Award among her numerous other accomplishments – check out Sandy’s website.
I wonder if the ADA doesn’t do more harm than good to people with chronic illness? More often than not, we don’t use visible assistive devices or even have a consistent disabling condition.
What do you think?
Prefer to “discuss” this in a more private forum? I’ve posted this as a discussion on my cicoach facebook fan page. You don’t have to be “on” facebook”.
Most of us find that other people can be clueless about what it’s like to live with a chronic illness. It makes sense since this is invisible, unpredictable and often debilitating. It’s hard enough to explain this to your friends and family. It’s even more difficult to explain to co workers who only know you in a certain context and rely on your ability to do the work. You might want to share this list — or just repeating some of what’s here when it’s appropriate.
1. For most people, health, like the weather, is relatively unpredictable and there’s an element of luck. But living with chronic illness means that I face unpredictable health daily. It can change as quickly as the weather, often without warning. I find this difficult, constantly challenging and even demoralizing. But, I try very hard not to let this prevent me from delivering my best.
2. When I have to “slow down” or not show up because of chronic illness symptoms, it can mean that others have to pick up the pieces to keep things going. I appreciate that this can be frustrating for you. It is for me, also. Let’s just make sure we discuss what I can do to prevent my illness from becoming a burden to anyone.
3. I’m not looking for your pity or even your sympathy. I don’t feel sorry for myself and I don’t want you to feel sorry for me, either. But I do welcome empathy, such as, “I understand this is tough”. And once in a while, it’s really great to hear your encouragement, such as, “You do a great job with this” (but only if you mean it.)
4. I know it doesn’t seem to make sense, but I can feel terrible and look fine. When most people have the flu or even just a cold, they look sick. My symptoms, sometimes disabling, are usually invisible. I know it’s hard for others to understand this, especially when I look the same through it all. That’s why I’m often nervous about what others believe about my health and think about me. It might sound odd but when I hear, “You look so good!”, I wonder if you think I’m exaggerating my experience.
5. You probably think you’re being helpful when you tell me what I could do to get better. Your Aunt Gertrude, who went into remission with that special diet, or your friend, Phil, who got better when he stopped working – they’re not me. I promise you, if I want advice, I will ask for it. Just because I’m not healthy, it doesn’t mean I’m incapable of managing my life.
Want to read the 5 other things on this list? You can download the full article with other free articles in the Free Resources section on the cicoach.com website (scroll down the page).
Some of my clients are unemployed and looking for new jobs or even new careers. But many are employees who are deeply frustrated by a supervisor’s attitude about chronic illness. That frustration led to me to develop a “list” to hand out in the seminars I deliver in corporate settings.
I’ve found that “good” managers are looking for insight and ideas for better managing a diverse population. And chronic illness is an issue of diversity! FYI - you might want to share this with your supervisor or colleagues.
1. SHOW YOUR RESPECT
- Promote confidentiality. If an employee has disclosed a chronic illness to you, it’s because you need to know. But this isn’t meant to be a “water cooler” topic. You should decide together who needs to know, what should be said and who will be responsible for the conversations.
- Respect boundaries. Chronic illness does not mean “open season” for unsolicited advice. Set an example for others and model this behavior.
- Clamp gossip. If you become aware that people are gossiping about this (or any!) employee, act before it blows into a storm and condemn the behavior. Such talk only hurts everyone’s performance.
2. GET THE INFORMATION YOU NEED
- Myths can lead to trouble. When an employee tells you about a chronic illness, learn the facts. Get enough information to discuss the situation credibly. The web can be a reliable resource but it can also be incorrect so be sure to “vet” your source.
- Don’t assume that you know how to help an employee perform successfully. Good intentions are a starting point but it’s not enough to want to do the right thing. Ask your employee what he/she thinks is necessary to get the job done and then take action to put these steps into place.
- Review company policies together. Review company policy together to ensure common understanding concerning vacation, sick time, disability leave and FMLA requests. Decide jointly how missed time and other related issues will be recorded and followed up.
3. SET PERFORMANCE GOALS
- Encourage realistic goals but don’t lower the bar. People should stretch to achieve goals but they must be achievable. Employees with chronic illness often need reminders to set themselves up for success.
- Create opportunity for flexibility. This is valuable for all employees in the current workforce, regardless of the reason. It is critical for people who live with unpredictable and/or debilitating health.
- Provide feedback. Chronic illness is not a reason to avoid giving an employee feedback about performance. In fact, it’s a necessary tool for success.
This is just a starting place. What would you add or change?
Diabetes should not be the reason that Sonia Sotomayor does not get approved for the Supreme Court. Sotomayor acknowledges that diabetes has informed the person she has become. But like all of us, there are a multitude factors that create her life story, including growing up poor, losing her father at a young age, being a member of a minority as well as getting a scholarship to an elite college, winning it’s top prize and so on.
What makes her personal narrative extraordinary is that it is a story of hope, reliance and triumph.
So why the big fuss out of the fact that Sonia Sontomayer has Type 1 Diabetes when she’s lived with it since she has been 9 years old? We should all be so “disabled” by illness and still accomplish so much!
I think it’s because the American public is deeply fearful of chronic illness. We can’t imagine that anyone who lives with disease can be “normal” . A Huffington Post article refers to the stigma of Diabetes. There does seem to be an “attitude” about this disease. Funny since it’s less likely to affect a person’s ability to be productive than other chronic illnesses such as lupus, MS, coronary heart disease,etc.
That same article describes how some pundits worry that because people with diabetestypically have a shorter life span (10 years) and Supreme Court Justices are expected to sit for decades, this could be a problem. Huh? As a Newsweek blogger points out, she or any other member of the court could be hit by a bus tomorrow! And let’s not forget that at age 54, she’s younger than most nominees by at least a decade.
Furthermore, as Amy Tenderich at Diabetes Mine says, the worry doesn’t stem from unfamiliarity with chronic illness ion the Supreme Court. Sandra Day O’Connor’s husband had Alzheimer’s. Ruth Bader Ginsburg has cancer. There’s “suspicion” that Chief Justice Roberts has epilepsy. ( Talk about a disease with stigma- not surprising that he wouldn’t discuss it unless he’s “outed”).
Amy closes her post asking if President Obama should be taking Sotomayor’s diabetes into consideration. To that question, I say a resounding NO.
It’s not I think this should be a private matter. The issue is simply not part of the equation.
Unless, of course, Sotomayor asks for special accommodations, such needing a bathroom break while hearing cases to self inject or delaying the work day until 10:00am. Or periodically needing time off from work for a disability leave.
Since I’m not aware of these requests, I can only conclude two things:
First, the American public continues to live in the “dark ages” regarding their attitude to chronic illness and working.
Second, the only good news about this “much ado about nothing” is that it highlights that this negative perception persists. And this offers the opportunity to build a platform on which to demonstrate that this bias is, in fact, a house of cards.
But let’s hear from you. Do you see Sotomoyer’s nomination as an opportunity? If you’re interested, start a discussion about this on my facebook “fan” page: http://www.snipurl.com/cicoachfbwelcome <!– /* Font Definitions */ @font-face {font-family:”Book Antiqua”; panose-1:2 4 6 2 5 3 5 3 3 4; mso-font-charset:0; mso-generic-font-family:roman; mso-font-pitch:variable; mso-font-signature:647 0 0 0 159 0;} /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-parent:”"; margin:0in; margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:12.0pt; font-family:”Book Antiqua”; mso-fareast-font-family:”Times New Roman”; mso-bidi-font-family:”Times New Roman”;} a:link, span.MsoHyperlink {color:blue; text-decoration:underline; text-underline:single;} a:visited, span.MsoHyperlinkFollowed {color:purple; text-decoration:underline; text-underline:single;} @page Section1 {size:8.5in 11.0in; margin:1.0in 1.25in 1.0in 1.25in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.Section1 {page:Section1;} –>
Did you know that May 10 was World Lupus Day? May is Lupus Awareness Month — and there is also multiple sclerosis month, breast cancer month, etc.?
Anyone else think that there’s something odd with the fact that we have to dedicate a day or month to create attention to DISEASE that so many live with?
I don’t live with Lupus but I do live with other Autoimmune Diseases. I firmly believe that there are more similarities than differences among those of us living with any chronic illness/syndrome. How about Chronic Illness Year?
O.k. I’ll climb off my “soap box” . In support of the effort to raise awareness for Lupus, I wrote a post for MyLifeWorksToday.com – gotta’ love that blog title:) . My friend, Maria Pfiefer, is doing a tremendous job working to support folks with Lupus.
Check out my blog post because Maria asked me to respond to this question: What do you do if you’re afraid that you’re going to be fired because of illness . Should you bring it up and talk about it? I suggest it’s not chronic illness that makes work difficult. It’s what happens because of chronic illness. 5 steps to help you figure out what to do.
Fifteen years ago, I stopped working for two years when ulcerative colitis and multiple sclerosis, chronic illnesses, made working — and even leaving the house — difficult. With two children in elementary school, a husband with a demanding job and disabling disease, work became the added burden I couldn’t carry.
Tell me. Does this sound familiar? I bet because it’s a story I’ve heard from countless others. The details change but the result is always the same.
I was lucky because although the loss of income was difficult, we could keep our home and put food on the table. I was also lucky because I was highly motivated to figure out what work I might do given my health. I only wish that I had thought more creatively and concretely about this earlier in my career development and when I was healthier. Iknow it would have been easier if I had resources to turn to.
That’s why I created my website, wrote a book and coach people around career and chronic illness. And here are 3 other, different kind of resources:
- National Return to Work Week. Did you know that 1.2 million employees lose time from work due to injury or illness? Even though NRWW was in April, the site has very useful information. Check it out.
- I also wish that I had had better skills at working with my doctors early on. So many times I didn’t even know what I didn’t know! Now there’s a terrific site for patients, The Savvy Patient School. I love it because it helps you become more of an advocate rather than feeling victim.
- Finally, sometimes it just helps to talk with others. That’s why I’ve created a “fan page” for discussions on facebook. You don’t have to be “on” facebook – Just use this link -and click on discussions to see what’s on our mind there. Join in!
Also, this month’s Headache Blog Carnival is posted.
