She told me her story. She lost her job and lives with unremitting pain. C (her name and most details have been changed) lives with a chronic disease that causes deep pain at unpredictable times. Although she had completed her most recent project on time and on budget, with raves from the client, she had been fired. Her exit review said that she hadn’t met performance standards– “Her direct reports says she shows disruptive and unpredictable flares of temper.” and “Her colleagues say that her behavior is unpredictable.”
When her supervisor gave her this demanding project, she had just been diagnosed. She had tried to explain that she wasn’t healthy and shouldn’t do this, but he told her not to worry. He valued and trusted her — she was the best at what she did and she should just keep at it. Couldn’t she see that this project was necessary to her career?
He had been her mentor and friend and now she feels betrayed because he didn’t listen to her. But she doesn’t know how she would do this differently in the next job. She feels hopeless thinking about her future.
I told her that she seems to have lost her ‘resilience’, she agreed. ”How can I be resilient when my health is getting worse? I no longer believe in the the one thing I could count on, my strong relationships and success at work. I don’t know how to talk about what I need. More importantly, I don’t believe I’ll be heard.”
The sad fact is that most of us who live with invisible health problems feel misunderstood.
In this post, How Doctors Respond to Chronic Pain, the physician writer poignantly describes how he was busy scribbling notes as a patient described her extreme pain. When the patient suddenly shifted into complaining that he wasn’t listening, he felt defensive and angry. But when he thought about the interchange after, he realized that she was right. He hadn’t been listening to her. The author noted that physicians frequently ‘tune out’ their patients with chronic pain because they have few tools to offer that will actually improve the patient’s condition. Physicians and most healthcare providers (and coaches!) fall into the trap of feeling helpless if they can’t ‘fix’ something. And that helplessness translates into ignoring what the patient actually wants — to listen with empathy.
How does this relate to C? Despite my years of training and experience and even my personal experience in living with ‘unsolvable’ health conditions, when faced with someone’s emotional pain due to life with illness, my knee jerk reaction is to run toward the fire to put it out.
Fortunately, when she told me her story in our first call, I had just read this article. I took a breath before speaking and reminded myself I didn’t have a magic bullet to shoot down her fears. But I could let her know that I understand how difficult this is for her. And that together, we would work to develop strategies that would improve the situation.
I was delighted by her relief. She sounded (dare I say) hopeful? In time she will find renewed resilience.
Do you struggle to actively listen to another’s story of pain? Do you wonder what to say or do that will demonstrate that you have heard?
Do you struggle to feel heard? Do you wonder what to do to make it happen?
Go ahead, tell me. Tell us and post your comment. We’re listening.
Frustration drove me to write a book. I wanted to debunk a message that too many of my female clients told me was wrecking havoc in their lives. Family, friends, healthcare team and co workers told them that continuing to work was harmful to their health. The ‘prevailing wisdom’ goes like this: work is stressful (can be — but so can driving in traffic), stress provokes illness (therefore you must avoid getting angry or tense?), therefore work is bad for people (primarily women it seems) with chronic health problems. With almost 35 years of living with illness, I can say from personal experience that this is not a useful equation. In fact, I believe that this thinking can be harmful to your health.
The book that I wrote with Joan Friedlander, Women, Work and Autoimmune Disease: Keep Working Girlfriend! made the case that not only is it possible to continue to work while living with chronic illness, it can improve your health outcomes and overall well being.
A caveat: In writing this, we recognized that there are those who do not have a choice about working. That, however, was not our target audience. We wrote this book for those who believe that they have options beyond not working but either cannot see them or need a motivating prod to push them along.
Recently, several articles have reminded me that healthy people and those who live with difficult health face many of the same hurdles. The difference lies in the packaging and the details. I am also reminded that women are particularly vulnerable to these challenges. The reality is that healthy and not so healthy women face tough decisions about their work commitment just when they need to make strong personal commitment to building a family. Career often takes a back seat during the prime career development years.
A recent article in The New York Times, “The Opt Out Generation Wants Back In“, focused on women who left the workforce to stay at home with their children, and the challenges they faced when they tried to return. Some left because their pay didn’t even cover child care cost, others because their work demanded too much time with too little flexibility. Some wanted to be home with their children and figured it wouldn’t be hard to return to work when they were ready. Others were urged by their working husbands that the family would benefit with mom at home. Regardless of why they left, the article explored the difficulties they faced in trying reenter the workforce.
These were all young, healthy women. Those who contact me face even bigger hurdles. Their health challenges mean that they must find and keep jobs where they can manage their family and their health needs (e.g., flexible scheduling, deadline changes, choosing to be under-employed, etc.). As you can imagine, this greatly reduces their options.
Another article, in the Harvard Business Review, Women Rising, the Unseen Barriers, describes the discrimination women face as they try to rise to leadership positions. Among other issues, women who are deeply invested in their careers experience bias from the male dominated world as they manage the multiple pieces of their lives while trying to prove that they have the capability to lead. The article cites gender bias as the major contributor.
Bias spills into many pockets of the workforce. People, particularly women, living with illness experience this when they ask to work differently due to health needs or speak about debilitating symptoms. As Laurie Edwards writes beautifully in her book, In the Kingdom of the Sick, women and men living with the same disease are invariably treated differently.
In my book, I wrote that chronic illness is an ‘equal opportunity employer’ in that it affects all ages, races, religions and gender. I’ve heard from dozens of men about the negative impact chronic illness has had on their career and personal lives. But none of the men, young or old, with whom I’ve spoken told me that it was ever suggested that they leave the workforce because it is harmful to their health. Mothers living with chronic illness often get a strong push, from many parts of their lives, to leave the workforce, at whatever cost.
The fact is that autoimmune diseases, the largest category of chronic disease, are four times as prevalent in women as men. AD onset typically occurs in the prime career building and child rearing years, between ages 25-45.
In light of these challenges, I have revised my workbook, KEEP WORKING WITH CHRONIC ILLNESS 3rd edition. The same ideas are there but based on reader feedback they’re presented with greater clarification. And I developed new skill sheets and guided worksheets as well.
FYI: This workbook is intended for men and women, those just getting started and those making career changes. The information includes career assessment, job and career identification, and making it happen. For the next month, it’s going to stay at the same price as Edition 2 – Just $44 for all that information and you get a phone call with me, too!
And while you’re at it, check out my Career Change and KickStart Programs, too. These are value laden and designed just for people like us.
You can ‘opt out’ thinking you don’t have a choice. OR you can do yourself a big favor by investing your time and resources into figuring out what you can do for yourself, beyond just surviving.
When my mother had a severe heart attack at age 60, her life was literally turned upside down. Since I was young, she had worked full time and loved doing so. She also frequently suffered with various bouts of fatigue and pain (and no diagnosis) that could put her to bed. Although she never missed work nor stop herself from doing anything because of the fatigue or pain, she lived most of her adult life with unpredictable and relatively debilitating health. From my vantage point, it seemed like she regarded it as a fact of life and spoke about it without self pity or anger.
But the heart attack, requiring surgery and long bed rest, combined with the weight of a life threatening diagnosis, was a turning point. Years later, she confided that when she returned to work, she felt that people treated her differently and she felt she’d lost their respect. This made her very uncomfortable but she didn’t think there was anything she could do about it. At the same time, she got the strong message from her husband, her doctor and some friends, that she was making her health worse by continuing to work. She wasn’t ready to retire but she didn’t see any options. When she left the workforce, she made what felt like the easiest choice available. I can’t say that leaving the workforce prolonged her life. But I do know that she experienced a lot less satisfaction with her life.
For most people, the sudden onset of debilitating health challenges feels similar to being hit with a steamroller. Even those who are familiar with chronic heath problems. Typically, you don’t have the time, however, to stay down. Work and life responsibilities are demanding you keep going.
The fact is that few of us have the skills or preparation to integrate difficult health into our lives. We are even less prepared for how others will respond to it. It is probably the single biggest issue that comes up for my clients. Ironically, it is a relatively straightforward issue to address.
Recently, a reporter for The Daily Muse asked for my thoughts about this (How to Handle a Major Health Issue at Work). Her article makes valuable points and I urge you to read it if you’ or someone you know is facing this.
The bottom line is that there is a minefield you want to avoid: the trap of thinking that you can do this alone. Health challenges, and especially chronic ones, are a significant setback. It’s admirable to want to be positive and intend to keep living your life as you’ve always done. But it’s rarely easy or straightforward and it often requires a different way of viewing your life and your interactions with others.
I explore the challenges of living with illness and working in detail in both my book (Women, Work and Autoimmune Disease: Keep Working Girlfriend) and my Career Thrive Booklets. My mother wasn’t the only person who left the workforce before she was ready because she couldn’t figure out how to manage her health and other people’s responses to it. If you’re struggling with unpredictable/debilitating health and challenged by how to manage this at work, give yourself a gift. Take the time, devote your resources, and spend what it takes to integrate difficult health into your life so you can continue to create the successes that allow you to thrive .
Twenty years ago, I was on SSDI for several years. When I felt well enough to try returning to the workforce, I worried I’d lose my benefits and not have the health to work. I did it anyway and it worked out for me. But I wish that the Return to Work program was available then. It would have made the transition a lot less worrisome. I’m told things are different now.
This post was contributed by Molly Clarke, the Social Media Coordinator for Social Security Disability Help. She contributes regularly to the Social Security Disability Help Blog.
Returning to work after receiving disability benefits can be overwhelming and confusing. While most people would prefer to regain their health and return to work, many don’t know where to start and worry about losing the safety net of disability benefits. If you find yourself facing these circumstances, the Social Security Administration (SSA) has implemented several incentive programs to ease your transition back into the workforce. This makes it possible for disabled workers to return to work slowly without having to jeopardize their benefits.
The following article will provide step-by-step instructions to help you get back to work.
The SSA’s primary work incentive program is called “Ticket to Work”. This program was started as a way to remove the barriers that were preventing SSD recipients from returning to work. This program offers the following services:
• Job training to teach you how to perform different types of work that will be less impacted by your health condition.
• Job referrals
• Vouchers or credits to cover work-related expenses like transportation fees or assistive technology.
• Continuation of SSDI, SSI, Medicare, and Medicaid benefits while partaking in the program.
• Suspension of continuing disability reviews while partaking in the program.
• A “Trial Work Period” during which you can attempt to work without jeopardizing your benefits.
TRIAL WORK PERIOD
One of the most useful aspect of Ticket to Work program is trial work period. If you choose to partake in the trial work period, you will continue to receive benefits regularly for nine months. You should note that a month will only count toward your trial work period if you earn $750. The months of your trial work period do not need to be consecutive. It will only end after you’ve earned at least $750 in nine months within a five year period. This security will allow you to return to work without losing your benefits if your work attempt fails.
During your trial work period, you must provide the SSA with the following information:
• Changes in your hours or work schedule
• Changes in your assigned duties or pay
• Expenses used to accommodate your return to work, including things like assistive devices and transportation fees.
You can report these changes in person, by fax, or by calling your local Social Security office
AFTER YOUR TRIAL WORK PERIOD
Once your trial work period is complete, the SSA will evaluate your ability to earn Substantial Gainful Activity—or SGA. In 2013, SGA is $1,040 per month. If your average earnings during your trial work period average or exceed SGA, your benefits will be discontinued. If your earnings do not exceed SGA, you will continue to receive your benefits.
At the end of your trial work period you will enter what is known as an, “Extended Period of Eligibility”, or EPE. EPE lasts a total of 36 months. During this time, your SSDI benefit will be determined on a monthly basis. Months in which you exceed SGA you will not receive a check. Months in which you do not exceed SGA you will receive your benefits. After the EPE is complete, your benefits will be terminated the first month in which your income exceeds SGA.
If, after the EPE, your benefits are discontinued and you cannot continue to work, you will have access to expedited reinstatement of your benefits. You can file for expedited reinstatement within five years after your benefits are initially terminated. While waiting for your expedited claim to be processed, the SSA will provide you with disability benefits for 6 months while they determine whether or not you still meet the eligibility requirements.
If you are ready to return to work, you should contact the SSA to learn more about the available work incentives and to see exactly how your benefits will be affected.
For more information, visit Social Security Disability Help (http://www.disability-benefits-help.org/glossary/ticket-to-work) or contact Molly Clarke at email@example.com .
NOTE: This is a guest post written by a former teacher who left work due to serious health problems and is currently building her own business as a copy editor.
Recently I came across an article in The Guardian, “Top five regrets of the dying.” In it, the author describes “regrets people have at the end of life”, as noted by a palliative care nurse.
As someone who lives with a difficult chronic illness, I found one point in the article to be particularly frustrating:
“Many developed illnesses relating to the bitterness and resentment they carried as a result (of suppressing their feelings in order to keep peace with others).” I have several problems with this statement.
1. The author uses the term “relating to”, rather than “caused by”, denoting a correlation between bitterness and resentment and illness, rather than causation. Although she’s not saying that these feelings create illness, the implication is there .
2. The statement promotes the idea in healthy people that by continuing to do the “right thing” (e.g., not harbor negative emotions), they can avoid illness. It seems to me that this creates a sense of false control that most likely will lead to even greater distress if serious illness or injury does occur.
3. Additionally, this idea blames the unhealthy for being unable to manage their emotions more successfully. This implies that chronically ill people cause their disease and failure to improve is their fault. Where’s the science to support this? Also, in my experience, this kind of blaming is counterproductive for someone who is struggling to improve her health.
4. Finally, what illnesses does she think are related to bitterness and resentment? Is she including all illnesses? Does she limit it, such as this is true for heart conditions or autoimmune diseases? Is she including the child or infant with cancer? Furthermore, while anger, for example, has been shown to play a role in the development of cardiovascular disease, I haven’t seen a scientific study that cites feelings as the root cause of an illness.
My personal experience has been contrary to the above cited quote. When I became ill, at age 29, I was extremely happy in all areas of my life. Everything was coming together for me. I enjoyed a teaching career, my friends, my family, and my hobbies. If I was experiencing bitterness and resentment, it’s news to me. Even now, looking back, I don’t see it.
I volunteered in a children’s hospital where I spent time with a two year old girl with leukemia. While reading books and singing songs to distract her from the IV medication dripping into a central line in her chest, I did not wonder if she was reaping what she sewed. I believed then, and still do, that her illness was caused by multiple factors, all beyond her control and having nothing to do with her emotional state. Had I thought otherwise, it would have been difficult to give her the support she needed.
When I was a teacher, I was trying to educate a group of third graders about their classmate with a neuropsychiatric disorder. I explained that their body might not always work in the same way as it does today. Trying not to scare them, I used the analogy of getting old, something they could relate to but was far away. My goal, aside from ensuring that this child be accepted by his classmates, was to help the students understand his condition. I wanted them to know that the disorder he lived with did not indicate a character flaw nor was it his fault. For the most part, they seemed to understand this, and I hoped that they would carry this attitude with them into adulthood.
I stumbled on this article online where it had been ‘shared’ among friends. I was struck that the author’s words seemed to remind them, the “healthy” people, how important it is to appreciate each day. That’s a good thing. But this is a lesson that those of us who live with debilitating chronic medical condition live with on a daily basis. Experience teaches us to appreciate even the smallest accomplishments.
My message to people who enjoy good health: Any one of us is vulnerable to disease or a life-altering injury that can turn our world upside down. There is no point in fearing this possibility. Please appreciate what you can do, take care of yourself as best you can, and live your life to the fullest while enjoying your full health.
But please, do not create what you believe to be a feasible scenario in which ill people have only themselves to blame. When the time comes that illness befalls you, as it almost inevitably will, you will not want our judgment. You will want our wisdom.
How do you know when it’s the right time to make a change? What can we do to make it as smooth as possible and to ensure that the change achieves what it’s meant to do?
Some level of change is a constant in anyone’s life. Just think of the weather. But clearly, there are many variations on this theme. Let’s consider just a few examples:
- Some have difficulty with change beyond their control. For example, this could be a reorganization at work that puts them in a different department or doing a different task. If you live with chronic health problems, out of control change is a constant factor in your life. Others move with the change they can’t control smoothly because they’re comfortable not being the initiator.
- Some have difficulty initiating change and are more comfortable when it happens to them. For instance, they might not even realize it but they prefer to be fired from a job rather than to initiate leaving by quitting. Or they might choose to be miserable in an apartment rather than learn to adjust to living in a new place. Others can’t bear not taking action when something feels difficult.
- Some find that a change to daily routine can be disruptive. For some, finding that their favorite morning coffee shop is closed, requiring they go somewhere else for their cuppa java, can be mind bending. Others seek at new places daily because it adds zest to their lives.
- Some seek big change and resist the small changes depending on their life situation. For some moving across country when they are 25 years old is easier than making a decision about changing the length of their hair. That same person, years later, tired of her home of 30 years, might find that moving the furniture creates sufficient sense of change rather than buying a new house.
Get the picture? Even at the starting point, where the idea emerges, each of us responds differently. For most, the very idea of change can bring an emotional charge, positive and/or negative.
I wonder about this frequently because the desire for some type of change is one of the primary reasons that people contact me for coaching. I’ve found, however, that it’s not enough to merely for a person to want to change something to make it happen.
Effective change, the kind that achieves what you seek, requires clarity. It starts with recognizing the real source of dissatisfaction that is creating this need. Then it takes a sufficient level of motivation (which varies depending on the degree of change required) to do what it takes to make the change.
I’ve wondered and played with this idea as I work with different people around varying situations. The question as I see it is:
What information and insight allows a person to approach the idea of change with as much clarity as possible? And what would that clarity actually mean to the end result?
When this issue came up recently in several coaching calls, I created an ‘assignment’ ( the project work that clients work on between calls that supports what we’ve been discussing).
When you find yourself thinking,
- I need to leave this …. or
- I need a new … or
- This …. has to be different
try this exercise.
Ask yourself the following 6 Questions and write down each answer.
- What do I believe is creating my dissatisfaction with the status quo? (Describe)
- What would this look situation ’look’ like and/or feel like to me if it were different? (Describe)
- What would specifically have to change for me to experience satisfaction? (List and/or describe)
- What would improve from this change? (List and describe)
- What options do I have in creating the change or changes that I seek? (List and describe)
- What am I willing to give up to achieve these changes? (List)
Use these 6 questions to achieve the clarity you need to create effective action. They can apply to any setting and they’re not just useful to situations in which a chronic health condition is a factor. But the issues that come up around wanting change and making it happen are even more complicated when you have health challenges, primarily because you feel more vulnerable and less resilient. Getting very clear is a wise first step for anyone.
I’m sharing this exercise specifically to get your feedback. I’m revising my workbook (Keep Working With Chronic Illness) and want to include such an exercise. Please share here: What works and doesn’t work for you in this exercise? What might it include to make it more effective? Test it out and post your thoughts here!
Twenty years ago, at age 42 and after 22 years of continuous employment, I exited the workforce. I’d been living with a diagnosed illness and then second one for 13 years. But I had never made any conscious choices regarding my career plan based on my increasingly limited health. Now within a matter of weeks, I left a job that I loved because I was too sick to even get myself to work. When I made that decision, and for a short time after, all I felt was tremendous relief that I had at least eliminated one source of stress in my fragile world.
But ’retirement’ didn’t produce the desired results. Although I had a full and satisfying life with two young children, a husband, friends and extended family, I sorely missed what I no longer had, my life as a ‘worker’. That person had a predictable schedule, daily socialization with colleagues, and was valued and compensated for her ideas and performance.
No longer employed, I volunteered in ways I hoped would be rewarding and give me the flexibility I needed. I found the former but not the latter. I still had to show up when I made a commitment and volunteer work felt like a ’job’ rather than the career I had always aspired to.
I became desperate to return to the workforce, in whatever way I could. It seemed like my lifeline to improving my overall well being. This time I approached career with care and thought, thinking strategically about my limits and my options and setting clear intention around my purpose.
Over the following years, I developed a business in coaching people with chronic illness around career challenges. My clients’ stories reinforced my own experience regarding the value of working, particularly when you live with chronic health challenges. That notion propelled me to write my book, Women Work and Autoimmune Disease: Keep Working, Girlfriend! While doing research for the book, I found several studies to support my experience that working promotes better psycho/social/health outcomes in those living with chronic illness.
Recently, I found a study that says: retirement results in the ‘drastic decline in health in the short and long term’ Specifically, the study found that:
- Retiring may ‘increase one’s risk of developing clinical depression by 40% and the risk of suffering from a physical ailment by 60%.’
- These risks increase with each year of retirement.
- Researchers recommend that people consider staying in the workforce beyond the average retirement age for health and economic reasons.
Most people who are not at “retirement age” think of retirement as a choice. Unfortunately, too often that’s not the case. Many organizations have mandatory retirement ages and others have ‘expected’ (not required but it’s obvious) retirement ages. If you keep working when you’re an ‘older worker’ and have difficulties doing a job the way you once did, you can easily feel like you’re being forced out.
There are striking similarities among the healthy but ‘aging population’ to those who leave the workforce due to debilitating health problems.
Clearly, it’s a different story if the work you do or the place that you work in is toxic — a highly pressured or extremely negative environment, the tasks are deadly boring or too difficult. If that’s the case, then leaving, even if you don’t have another employment opportunity, may be the best way to promote your well being.
But if you live with a chronic illness, it is typically a gradual increase in symptoms and debilitation. Actual aging is more predictable. It seems that it’s in anyone’s best interest, healthy or not, to look at your future and prepare. Consider all of your options, create plans that offer you flexibility and maximize your sense of resilience — before you reach a dead end.
The email asked why I limited my new program, Kickstart, to ’young adults”, ages 20-30. Really?
The age designation isn’t intended to limit anyone. I did this as my own personal ‘shout out’ to young people. Why? Because the opportunity for change is that much greater when you’re starting out, less encumbered by personal responsibilities and choices you wish you hadn’t made. (But please, don’t let my arbitrary age bracket limit you. I have a friend who insists that she’s a young adult at age 40!)
I created this program because, frankly, it pains me that so many folks find that illness has meant that their work options are severely limited. Just this week another person showed up in this tough spot.
Suzanne (name and details are changed) signed up for my Just in Time program, a short, highly focused, single-topic series of 3 sessions. She’d given three months notice at her current job because she believes that the nature of the work and the lack of support is making her sicker and more debilitated daily. She said that she wanted to identify what to say in an upcoming job interview to determine if she could get the accommodations that she believes would allow her to keep working.
But Suzanne was unable to focus on the interview in our first call because her challenges overwhelmed her. Although she’s lived with chronic pain for 20 years, it’s become severely debilitating since she started her current job three years ago. The pain is so bad that she no longer drives, lifts or carries anything beyond 2 pounds, and can only use computer for a few minutes at a time. Adding to her sense of burden, she’s in serious financial debt from her medical bills.
As we spoke, she was stuck when she considered what she might ask in the interview. The worry was so great and the barriers so large that she had trouble thinking clearly, the negative tape in her brain went into ‘play mode,’ and the roadblocks left her speechless.
Suzanne is an example of someone who, by her own account, should have addressed this years ago. Now in her late 30′s, she has spent 15 years struggling to stay in a career that has become increasingly difficult to sustain. Unfortunately, she’s backed into a tight corner and lacks the wiggle room she needs to make the kind of changes that would improve her quality of life. In a good moment, she hopes to find a better job. But her experience leads her to feel trapped. She fears that she’ll take any job she’s offered to pay the rent and have health insurance. Even worse, she fears that she won’t be able to keep working. She doesn’t see choice. She’s so exhausted from the years of just ‘getting by’ that she has neither the time, energy nor resources to develop techniques for living with pain or new skills that give her greater employment flexibility.
Suzanne isn’t alone. Too many struggle to find employment. But a chronic health condition adds a dimension that can make this a seemingly impossible task.
I don’t believe this has to be the case. But when you’re young, you’re less likely to want to view challenges created by difficult health. It’s hard to believe that anything can stop you — if you really want it.
And that is the conundrum. People who are young, because of their age and life phase, would greatly benefit from addressing and exploring these issues in a guided and supported program. And those same ‘young’ people are unlikely to think they need this or seek help.
Your thoughts on this? I’d love to hear them.
It’s never easy to live with a debilitating chronic health condition. But when you’re in your 20′s and 30′s, it’s particularly difficult.
Why? Because everyone else is ”living the life ” that’s expected — launching careers, building long term relationships, planting seeds for a promising future.
Meanwhile, you’re juggling health appointments with unpredictable, demanding health needs and the daily question of ’what’s today going to be like for me?’. Every day is a struggle to just get by. It’s not so easy for you, is it?
I know how hard this can be because it was for me. I developed a chronic illness in my late 20′s. Although I’d carved out a career path and had my successes, it quickly became clear that I couldn’t sustain it. I felt frustrated and confused, searching for help that I couldn’t find. That was over 30 years ago. I’ve since learned that that my story is neither unique nor unusual.
Yet, my professional experience has shown me that few are willing to tackle these issues at this time in their life. That’s understandable. The idea that living with illness could upset your career dreams, especially when you’re just getting your life started, is not pleasant.
But I’ve seen how that kind of thinking can be a recipe for disaster. In fact, I believe that this is precisely the time to do just that. Why?
Because people living with chronic health challenges are more likely to create work success when they:
- Have concrete, marketable skills that they know how to apply in a variety of settings.
- Have the mental tools that allow them to stay focused and take care of themselves when illness and life collide.
- Have the clarity to see the challenges and identify the opportunities that will allow them to manage unpredictable health in a difficult work environment.
Most importantly, I’ve found that the earlier in your life that you develop these competencies rather than spending years going in a direction that leads to nowhere, the better off you’ll be on a psycho/social/financial and health level.
That’s why I created this unique new program, specifically designed for those between 20-30 years old (approximately) and live with chronic health challenges. Have you:
- Graduated from college or a technical program with no idea for the next step other than what you can’t do — because of your health?
- Completed advanced education or training but find that you can’t do the jobs that this leads to — because of your health?
I’m delighted to announce Kickstart Your Career, an eight session program that offers a value laden opportunity for you to craft a concrete plan that will improve your situation. This is your chance to take charge and create your career path with a carefully crafted road map that incorporates your strengths, your dreams and your health. Want to know more?
Looking forward to hearing your thoughts, especially after you look at the program. Are there things you’d like to see included?
Oh, and feel free to forward, tweet it or fb this post!
When I developed a urinary tract infection and numb fingers at age 27, I didn’t know that these were the first signs of what would become a lifetime with chronic illnesses. Two years later, severe fatigue and optic neuritis led to the multiple sclerosis (MS) diagnosis. I had no idea what it would mean . Over the following years, I switched career direction several times searching to find something I could keep doing in spite of periodic debilitating symptoms. When I developed a 2nd autoimmune disease, ulcerative colitis (UC) 13 years later, I had a job I loved and two young children. Over the next few years, I became very ill and unable to do anything ‘well’. Very reluctantly, I left the workforce.
But I desperately wanted to work again. I didn’t feel whole without it. When an ileostomy cured the UC and MS drug therapy slowed down the course of the disease, I was ready. I couldn’t return to my former career path so I ‘reinvented’ myself. By age 50, I was in the best health I’d been in for 20 years and self employed, coaching people with chronic health challenges around their work life.
But in my late 50’s, old neurologic “damage” worsened and once again, I started to lose chunks of time to debilitating symptoms and illness management. This time, however, I could continue to work because working for myself gave me the flexibility I needed.
Over the past 15 years in coaching people with chronic health challenges, I’ve learned that my story is not unusual.
In the Kingdom of the Sick, by Laurie Edwards, takes it’s title from Susan Sontag’s book, Illness as Metaphor. I read Sontag’s book when I was first diagnosed but I couldn’t grasp the magnitude of most of what she said because I was a newbie to this Kingdom. Now I do.
Edwards quotes Sontag, “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of is obliged, at least for a spell, to identify ourselves as citizens of that other place.” Turning the pages of this beautifully written, highly informative and very important book, I seemed to pump my fist in the air, signaling affirmation and gratitude.
For many years, there was little written on the subject of living with illness. That has changed and now there are numerous, useful books for those of us living with illness (take a look at the left column of this blog, Books on My Mind). But In the Kingdom of the Sick offers up something different. It gives us the tools to develop a societal context for how we perceive ourselves and the perceptions we encounter.
I share the top 5 points in her book that I found particularly compelling (this is pretty arbitrary since I bookmarked almost every page):
1. Chapter 1, p.16 : “This rational, observational medicine centered on the patient, not the disease, and Hippocrates and his followers were interested less in the specifics of singular diseases and more in understanding the natural course of an illness.” “The Hippocratics’ view was actually quite simple: health represented equilibrium, while illness represented an upset to the harmony.” (I know that’s really 2 but…)
2. Chapter 1, p.17: “…the Middle Ages, influenced by the spread of Christianity, reflected a spiritual understanding of disease and plague as wrought by sin. This Chapter resonated with me because it offers an explanation for the development of bias toward illness .
3. Chapter 2, p.34: “the very nature of chronic illness…. is antithetical to the cult of improvement and enhancement that so permeates pop culture.”
4. Chapter 4, p.85: “…if the main focus and success of the women’s health movement was in redefining the doctor-patient relationship, then why are there still so many instances where women in pain have such unsatisfactory encounters?”
5. Chapter 8, p.163: “Participatory medicine is a model for moving forward within the medical establishment as empowered patients – and the very tools that make this change possible are the same ones that can distract from this forward motion.”
I’ll close with 3 questions I posed to Laurie:
RJ: We both know that your life is full with college teaching, your writing projects, your family and, your own health numerous health challenges. What propelled you to do the copious research and writing that this required?
LE: Quite simply, we can’t afford to ignore chronic illness. An estimated 133 million patients live with chronic illness, and by 2025, that number is expected to reach 164 million. It is responsible for 7 in 10 deaths, as well as ¾ of all health care spending. But it’s so much more than that. Chronic illness is not something that just happens to other people. It will happen to most of us, and there are still underlying problematic assumptions and misconceptions about chronic illness. For example, there is still this idea that people who are sick are sick through their own fault. Consider HIV/AIDS or type 2 diabetes and the underlying idea that people with CI are somehow weaker. This is also seen in the way we treat women with pain, for example, who are often told their pain is either in their heads, or that they should just be able to push through it. We’ve seen some wonderful books that look at pain, cancer, and other diseases, think Melanie Thernstrom’s, The Pain Chronicles or Siddartha Mukherjee’s, The Emperor of All Maladies. But no one has really taken stock of chronic illness as an entity, with all its complexities and competing agendas, and that’s what I wanted to accomplish.
RJ: What do you think makes this book important now?
LE: In the Kingdom of the Sick is a social history of chronic illness in America because I found it was impossible to extricate the experiences of living with physical illness from the competing forces of culture, social norms, and technology that surround patients. Inevitably, this became as much a social history of activism as it is a social history of disease because it was equally hard to tease out advancements in treatment and research from the patients and advocates who fought for them.
RJ: Is there one BIG message that you hope people will get from reading this?
LE: The definition of chronic illness as something that is treatable, but not curable, chronic has changed so much. What are the consequences of that, both positive and negative? That’s where I started.
I wish I’d had Laurie’s book when I started this journey.