Achieving the success you desire when you live with a debilitating chronic health condition can require change in the most unexpected places. In my experience, those of us who can meet the challenges are more likely to thrive, not just survive.
One key element for thriving with illness is the ability to communicate effectively. This is particularly important because most symptoms from illness are invisible. This means that other people have no idea what you are experiencing, unless you tell them. And even when some symptoms are visible, others cannot understand how this impacts you, unless you tell them.
That means that the burden is squarely on you to describe your experience of debilitating symptoms as they impact your life.
Jim lives with Crohn’s disease (names and details have been changed to protect client privacy.) The disease has been getting progressively worse over the past ten years and he is working at an increasingly uneven pace. Although he has always done well at his job (as a senior accountant in a Big 10 Firm), his colleagues and his supervisor frequently express frustration about what is not getting done or getting done late.
Jim has not told anyone at work that he lives with a disease. He doesn’t see why he should have to tell, since it’s nobody’s business. But he has become increasingly angry with his colleagues. They often seem annoyed by his absences, or missed deadlines, as he’s struggling to manage difficult and painful symptoms. He has thought about leaving his job and taking advantage of the company’s private disability policy. But it won’t be enough for his family to live on and he worries that he would be bored if he doesn’t work.
Jim realizes that he is stuck, and needs to do something to pull himself out of this place. He describes himself as a private person who does not talk easily about his feelings or his needs. “I’ve always been a man of few words and it’s never been a problem before,” he told me. This style is not working for him now, but he does not see what he might do differently.
Chronic illness is creating problems that require Jim to stretch his comfort zone and develop new skills. When he was able to explore his situation, he discovered he had options. Once he recognized what kinds of changes and accommodations he needed at work, Jim could see the opportunities rather than just focusing on the obstacles. He was struck by how much he relied on his colleagues and they relied on him. This motivated him to develop his capacity to discuss his situation sufficiently with others, so he would be able to manage work more successfully. But Jim still felt completely unsure about what and how much to say.
To learn more about the 3 Guidelines that Jim and I came up with to help him approach this strategically, read Chapter 1 in my Booklet, Are You Talking, part of the Career Thrive Series.
NEWS FLASH . . .
A new study shows that ” … people find work to be less stressful than their home lives. Work was, in fact, a haven.” (WBUR.org/NPR). That same news report cited a poll conducted by NPR, Robert Wood Johnson Foundation and Harvard School of Public Health found that, … “health problems, the death of loved ones and juggling busy family schedules often scored among the top sources of stress in people’s lives.”
But isn’t this counter to how most of us think about the sources of our stress? People tell me that they want more time with family and fewer work demands– that will make them happier and less ‘stressed’ . It’s rare that I encounter anyone in my professional or personal life who describes work as a place where they can relax, a place to flee to.
When questioned about this, one researcher said that she discovered that people find that work is one place where people think that they can say ‘no’ . “If you’re really unhappy, you can leave. Not so with your family — or your health.”
So then, is the message that work is actually good for you? That was certainly one of the key points we made in our book, Women, Work and Autoimmune Disease: Keep Working, Girlfriend! (side note: the title was supposed to be ….” and Chronic Illness” because we believe that the same issues applied to anyone with a chronic health condition. But the publisher had a different agenda.) Our message was when your body becomes the source of pain/fatigue, creates unpredictability, and represents the loss of what you could once do, work holds the possibility of being one place where you have the opportunity to take charge. (But, hey, why don’t you buy the book and read more?)
Unfortunately for many of us, the actual work experience usually falls way short of our hopes. Too often it’s that place where you encounter pressure, difficult people and poorly managed systems. And without support and resources to maximize their potential, too many people with chronic health conditions are lucky to survive in the workplace.
It is useful to remember that the negative experiences from work pales when compared to a significant loss of a loved one, a marriage or one’s health. As one researcher remarked, “No matter how urgent something is at work, you are not as attached to that urgency as you would be to, say, a health scare or the death of a loved one, because we are emotionally entangled at home in a way that we aren’t at work.”
So why do people talk about work stress so much? Because it’s acceptable. Everyone’s got it. But if you’re struggling with unpredictable and difficult health, now that’s a much tougher thing to talk about, isn’t it?
How do these issues stack up for you?
I’ve noticed something odd and I wonder what it’s about. People who live with chronic health conditions, too often make important career decisions without first questioning their assumptions. Of course , “healthy people” fall into this trap, too. But let’s face it. If you’re living with debilitating chronic health, you have less wiggle room for poor career choices.
When “A” told me that she wanted to leave her job, a job that had been her career goal since starting college 15 years ago, I understood . The demands on her time and energy to deliver more and the increasing number of tasks that she didn’t like doing, left her wiped out and barely able to move at the end of the day. Aggravating this, her symptoms had been visibly flaring, making tasks more difficult and symptoms harder to hide from her team.
But when she announced that she had decided to leave her job to start her own business so she could have the flexibility she needed to get healthier, I was confused.
Recently “A” had what I think of as an “ah hah’ moment. Filling out a “Wheel of Life ” ( a simple but eye opening tool in my Keep Working With Chronic Illness Workbook) , she was shocked by how out of balance her life seemed. A recent divorce, few personal relationships and no outside interests created a very bumpy, uneven wheel. Reflecting on this, she had attributed this to her single-minded focus since high school on academic achievement and building her career. Typically this is a strong motivator to create change before getting into the Workbook self assessments.
But somehow, she had moved quickly from deep job frustration, to wanting more balance in her life and then to deciding to start her own business so she could be her own boss and become more flexible with her time and her approach to work – - and that would allow her to get herself healthy. Huh?
Tue there are diseases in which symptoms can be better managed through behavior change (e.g., Type 1 Diabetes, some types of heart diseases, certain pain syndromes, etc). But even those people living with such diseases (and she doesn’t) who do all the right things can find that symptoms worsen because there are elements beyond their control.
We can take charge, to the best of our capacity, of our thoughts, actions and responses to what happens. And that’s no small feat. In fact, I think it’s a major accomplishment.
So why not focus your energy first on you, where you have the best chances of success? Finding a less demanding boss might be a short term solution but it’s also likely that you’ll run smack into other demands on your time. Start your own business can sound like it gives you control. But it’s also likely that you’ll have an even more demanding and unrealistic boss. Only this time it’s you. You can bring anxiety, stress and worry to your job wherever it is. You can find ways to avoid taking care of yourself whatever you do.
Bottom line? Before making significant changes, stop. Give yourself a gift. Question your assumptions. Then go to work.
This is a GUEST POST written by Sandra Mills.
People who have chronic illnesses or any long term health condition need a health plan designed for managing complex medical conditions. It sounds simple enough, but there are many companies and many plans available. Choosing the best health plan to support a person suffering from chronic illness involves exploring coverage parameters, reimbursement and billing practices, and access to care guidelines.
One way that consumers can compare plans efficiently is to make sure they understand the industry language before contacting plan administrators. Understanding that co-insurance is a percentage of a fee and co-payments are fixed-fees helps patients compare two policies side-by-side. Carrington College has developed a guide on explaining the basic vocabulary list to help coverage seekers get past the health insurance jargon (see my post: 5 Things About Health Insurance) you need to know .
Coverage and Summary of Benefits
Insurance companies have some standard offerings and some flexibility to set pricing and coverage terms. For example, according to Kaiser Health News industry standards require insurance plans to cover annual preventive care for women, but do not give the same free-of-charge services to men. There is nothing to prevent a company from offering preventive care for men, but it isn’t required.
Also, physicians can charge an additional fee for “chronic health management” during an annual exam if the patient has complex conditions, such as cardio-vascular disease, diabetes or other chronic conditions that require a higher level of involvement.
Questions to ask:
• What are the co-pays for services and supplies?
• Is there an annual limit on any services?
• What are the deductibles and out-of-pocket limits?
Mental Health Coverage
In 1999, the Surgeon General’s Office issued recommendations that reshaped the way medical providers and patients view mental health and preventive health care. The Center for Disease Control (CDC) reports that more than 1 in 4 adults has a diagnoseable mental illness during any given year. Given this information, you might think about coverage for preventive measures and treatment options for mental disorders as a necessity, rather than optional.
The CDC report listed the following information specifically for people who have chronic illnesses:
1. Chronic illness and mental health have a circular (reciprocal) relationship. Mental illnesses provoke or complicate treatment of diseases, such as asthma or diabetes, and chronic illness negatively affects mental health.
2. Social determinants, such as income and work status impact mental well-being.
3. Physicians should incorporate mental health assessments into chronic illness management.
Billing and Practice Management
People might come across references to ICD-10 readiness. In simple terms, the ICD-10 is a set of numerical codes that medical providers and insurance administrators use to identify services and supplies. The codes make sure that a patient’s health record is accurate, that doctors and labs bill properly, and that insurance administrators pay for claims according to the policy guidelines.
New ICD-10 codes take effect in October 2014. Although this might sound like only an administrative issue, improper coding could result in reduced or denied payment by insurance companies. This could elevate stress unnecessarily, which could negatively impact the patient/provider relationship and the patients overall health.
Medical Group Management Association released study findings that 98% of percent of clinicians — physicians and other medical providers — are concerned about being able to properly code illnesses and treatments. It is important for patients to proactively approach health care. Ask how prepared prospective plans are for the upcoming transition.
Health Reform GPS reported changes in health care delivery based on the Affordable Care Act. These changes include mandated coverage for chronic care management and prevention services. The best plan should also provide the following:
• Access to physicians locally.
• Emergency care and health management coverage.
• Choice for hospitals and inpatient treatment facilities.
• Prescription options: locally or via mail order.
Finding the best health care plan for patients with chronic health conditions requires more than just finding the lowest priced policy. To get the best fit, people should consider local access, practice management policies, and coverage options along with the monthly premium.
Guest Blogger, Sandra Mills, is a career, health, and healthcare industry freelance writer. She has written several articles on health and health insurance. She can be reached on Twitter and Google Plus
She was struggling with whether to tell her team that she lives with a chronic disease, multiple sclerosis. There seems to be a tipping point when disclosing a long term chronic health condition starts to feel like a necessity rather than a choice. Low impact symptoms become more debilitating, symptom ‘flares’ last for longer periods, and new symptoms are creeping in.
Although she was diagnosed two years ago, she hadn’t told anyone at work about it. As far as she was concerned, there hadn’t been a need because the disease hadn’t interfered with her work. Until now. She was starting a new drug therapy that required a one week hospital stay and, at least for the first six months, would leave her feeling sick and exhausted for two days each week.
The thought of discussing this with her team made her anxious and depressed. She told me about a senior director who had been open about his cancer, surgery, and follow up treatment. People seemed to rally around him. But why wouldn’t they, she asked? “Cancer is frightening and tragic. Everyone acted like he was a hero who was going to war.” And then it was over – and it seemed like the war was won. When her boss returned to work, life returned to normal. It looked, at least to her, cut and dry.
But a chronic disease is not a single battle. By definition there is no known cure and symptoms that impact your work are not ‘cut and dry’. Chronic disease lsts a lifetime, not a few months or even a few years.
I suggested a journaling exercise regarding this. I’m sharing (fyi – she agreed to let me share this here) some of what she wrote:
- Will they think I’m being dramatic, or worse, exaggerating my difficulties? They can’t see what I’m experiencing.
- Will they lose trust in my ability to get my job done now that I’m not well? They rely on me to be the glue that keeps the moving parts together.
- Would they lose momentum and focus when I need them to be more motivated and focused than ever? They look to me when they falter.
- Will they think I’m burdening them unnecessarily with my problems? It’s my responsibility to solve, not create, problems.
At the end of her journaling exercise, she’d decided to say nothing and continue on as before.
It’s easy to see how she reached that conclusion. Yes, her job is to help others do their jobs to the best of their ability. But what if she could no longer do this in the same way? What risks lay in not confronting the changes she faced?
I asked if she could imagine a way to re frame this picture. I asked her to consider how she might open the window to find opportunity rather than keep it shut in fear.
Could she frame this so it’s an opportunity rather than a loss? Could she envision a way to discuss this so she displays strength rather than weakness?
I see two choices when you live with debilitating symptoms that impact the way you feel, what you are capable of doing and the way you work. Either you hide or you share this information. Yes, there are situations where hiding this is necessary for your job safety. But when there is the possibility to share it, you are more likely to have conversations that offer the opportunity for productive alternatives. Sharing this acknowledges that problems (call them stumbling blocks or challenges–any euphemism you want) happen. And, the most effective option is to address them ‘head on”.
The bottom line? When symptoms impact our actions (or our inability to act in the way that’s expected), we do significant damage to our sense of self and our credibility with others when we hide the situation. Damage that we cannot afford, physically, mentally or emotionally.
Do you live with a long term health condition? Ask yourself: What gets in my way of turning loss into opportunity?
It’s been 35 years since I developed the first symptoms that were eventually identified as signs of Multiple Sclerosis. Over the years, I’ve developed other autoimmune diseases and syndromes and when I think about it, all I can say is that it’s been a slog. Illness has taken up too much of my life: the time spent trying to figure out how to get things done while my body screamed with pain or the need to rest, time spent searching for diagnosis and getting treatment. Too much of my life’s identity consumed being a patient.
This past year, I’ve been healthier than I’d been for the previous 6 years. And guess what? Being healthier, I felt a little lost. Now that my life wasn’t consumed with taking care of myself, I could focus on the fun stuff — family, friends and work . But I didn’t slip into this easily. I found myself wondering who was I, now that illness no longer consumed my time?
Funny thing is that once I realized what was going on, I recognized a familiar place. I’ve had several long bouts of even worse health issues than this that were then followed by periods of ‘normal’. Each time, I have to recalibrate who I am. I find myself questioning my work (is it enough, am I good enough, what do I want to be doing?), my family (do I give them my full self, am I pretending to be what I’m not, am I hiding behind illness?), my friends (do I know how to be a good friend now that I’ve got the energy for it, do they know how to be a friend to a healthy me?) This time I had to dig deep into the pockets of resilience that are still there.
I think this ‘off balance’ response to moving into a healthier state makes sense when you live with debilitating chronic health challenges. As health waxes and wanes, your identity shifts to adjust. It makes sense when I think of it. But it’s tricky. I watch as my clients struggle to adapt and I tell them (and me) that this is another example of why resilience is so important.
It’s helpful to know that this is necessary. I don’t ever want my identity to be wrapped up in being a sick person. And, certainly , even less so, when I’m in a healthier state. But knowing this doesn’t make it easy, does it?
Being a student who lives with chronic health challenges requires acquiring and mastering a sophisticated skill set that is not part your educational curriculum.
Any successful student learns to adapt to norms and rules set by others – - starting in preschool. Isn’t that the name of the game? And those who develop this skill early are more likely to succeed in this environment. Adaptation becomes even more important when you are in post highschool education — college, graduate school or technical school.
Being able to adapt is critical when you live with any kind of chronic health challenge because you live with unpredictable issues that are often beyond your control.
In “When It Comes to Chronic Illness, College Campuses have a Lot to Learn”, Cogniscenti, WBUR.org Laurie Edwards explores what happens when students with chronic illness face rigid college norms and rules. Laurie points to opportunities for colleges to change their response to more directly meet these students needs. At least 7% of American youth live with at least one ongoing health condition that disrupts daily activities,not an insignificant number. But few educational institutions are committed to recognizing this distinct population (as opposed to visible ‘disabilities). Nor are they interested in putting their resources toward meeting their needs.
That puts the burden on the individual, you, to figure out how to manage the situation so it doesn’t manage you. Edwards writes, “Illness isn’t a free pass for incomplete work; it’s an extenuating circumstance that requires negotiation and mutual accountability.”
I offer a program for students and post grads to acquire these skills and others — to identify what is most possible while living with debilitating symptoms. If you’re a student with chronic health challenges, you have the opportunity to learn and master skills that will help you be more successful in living with debilitating symptoms.
As Laurie notes, you will need these skills to be successful throughout your work life.
NOTE: This is a GUEST POST .
Modern lives move at a hectic pace and most people live with higher than desirable stress levels. In particular, a highly competitive work environments challenges our ability to keep up with competing demands. And, like it or not, family and personal commitments typically take up the rest of our time.
Despite our best efforts, stress inevitably creeps into our daily lives, especially on the job, where responsibilities pull us in all directions. Managing personal life and work commitments are monumental undertakings for most people. But chronic health challenges add another layer of complexity to the process.
Stress is the body’s natural response to what we encounter. Stress helps us to manage the ups and downs of daily living. But prolonged stress impairs our ability to function, especially when high levels are experienced for long periods of time. Being able to relieve or decrease stress at work relies on a number of approaches proven to mitigate our tendency to become “stressed-out” or “over-stressed”. The following are tactics that many healthy people find useful. If you live with chronic health challenges, the following ideas are even more important to consider.
When you live with unpredictable chronic diseases (such as autoimmune, heart, etc.) or pain/fatigue syndromes, you learn quickly the value of trying to maintain flexibility in your life. When you can extend that flexibility to the workplace, it can be a significant stress-reducer. A flexible work schedule can ease the stress caused by rigid work hours and deadlines. And it can help reduce the internal questions that wear you down, such as, “What if I am unable to make it to work tomorrow?” and “Will my boss understand if I need to work nights, so I can schedule medical appointments during the day?” Look for those places where you can incorporate a schedule that allows for change into your daily routine, wherever possible.
Knowledge Is Empowering
Everyone in the workforce faces many types of uncertainty. But people with chronic health conditions face additional questions that come from an uncertain health future. They worry about how their conditions will impact their employment and their benefits. When you educate yourself, you can reduce the stress that comes with uncertainty. In addition to specific information about your medical condition, inform yourself and stay current regarding your employer’s disability and worker performance policies. Short and long-term plans are typically different and with differing restrictions and it is useful to know what this could mean to you. Your ability to stay at your job can vary from company to company. Even if you are fully able to perform your job functions other factors can impact your employment as well as your access to health and disability benefits. Federal laws also regulate how employers respond to changes in workers’ health. Consult regulations issued by the Federal Government, as well as protections on the books in your state.
It is consistently noted that sedentary work environments lower productivity and squash creativity. It is important for all workers to incorporate movement into their workdays. When you live with a chronic health condition, your body simply demands this, regardless of pain or fatigue. Desk workers, for example, can get up and walk around for at least several minutes each hour. You can do simple leg and arm exercises at workstations to get the blood pumping again. Getting your blood flowing has been shown to help your body (and your mind) combat the effects of stress. Don’t let ‘lack of time’ be an excuse to fail to take advantage of any company-sponsored fitness programs available, including on-site workout facilities. Yes, you probably feel ‘guilty’ that health already slows you down. But the more you can exercise your body and mind in positive ways, the more you are doing to take charge of your health and stay employed.
Striving for positive work relationships is a worthy goal for us all, but it is particularly important when you live with an unpredictable, chronic health condition. Strong co-worker relationships give you back up when your body disappoints you. They will support you because they believe in you. And you can reduce the stress of the work environment when co-workers care about you and support you. It’s in your best interest to be an effective leader, a productive staffer and that person who finds common ground with even the most “difficult” employees of your organization.
Focus Your Mind
Physical wellness walks hand-in-hand with psychological and emotional health. You can reduce workplace stress with concerted efforts that focus your mind-power in positive ways. Mindfulness techniques, based on Buddhist meditation, provide relaxing distractions from work stress. The practice essentially refocuses your mind to a healthier way of thinking. Instead of focusing on the stressful events in your life, mindfulness advocates for thoughts centered in the here-and-now. By consistently focusing on the present, dwelling on stressful concerns isn’t possible, lowering workplace stress levels.
This guest post was written by Sarah Brooks from Freepeoplesearch.org and gently edited by Rosalind Joffe. Sarah is a Houston based freelance writer and blogger. Questions and comments can be sent to: brooks.sarah23 @ gmail.com.
“Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.” Leonard Cohen
I have a long history with pain and poorly functioning limbs so I was delighted to leave my Physical Therapist’s office with a clean bill of health. At least for that day.
But it was what my PT noticed about the work I did that struck me, “… you showed dedication in sticking with this new exercise program, tweaking and resting as needed, even when the activity itself seemed to create more pain”. I knew what I wanted when we started and I had clear benchmarks in mind for improvement and I couldn’t have done this alone. I can only take risks when I’m working with someone I trust and has something to offer.
No surprise here at I’m a believer in getting support when trying to make important changes. I wouldn’t do the work I do if I didn’t use resources myself.
After 35 years of living with debilitating autoimmune diseases, my body is currently stable and illnesses are relatively quiet. I’mhealthy to a degree I didn’t think would be possible to achieve again. I’ve had times like this before and I have no doubt that this, too, will change. I’m trying to savor it while it lasts.
But I also know that I never climb out of the dark places of illness and bad health on my own. I create a village to support me.
And each time I’m working with a client who is in that kind of bad time — when chronic health problems suck the life force out you and you lose any semblance of who you were – I’m struck by the determination it takes to climb out.
If all you can see is pain, fatigue and a life of loss, how do you muster the energy, courage and hope to keep your spirits afloat? Where do you find the resilience to keep trying? What words or actions will help this person to stop wallowing in chronically bad health and create a different place that supports balance, resilience realistic hope?
Does it sound simplistic to say that there is a broad stroke approach you can take?
- Distraction — do things that shift our mind from negative thinking so you can be productive.
- Mood lifting activities – these should be things that actually move your mood you to a more positive place.
- Engage in satisfying experiences — focus on what you can do (not what you can’t) that allows you to get out of yourself.
Doing the above requires motivation. Few of us are born with grit and resilience. But I believe that we all have the capacity to develop it.
Do you want to be that person who finds a glimmer of hope – even when your body seems determined to shut it down?
What do you do to find the light?
FYI -I listen to music that soothes my soul.
I’m not Ann Landers and I don’t have offer and advice column. I hope you’ve noticed that these posts intend to inspire questions rather than give answers, offer ways to think differently and encourage you to take risks. And, most importantly, to find the resources and help you need to do this.
That said, this email, sent asking for advice, included a comment (in bold)that resonated and I have to share it.
Do you feel better when you do more? Regardless of your capacity, do you think that activity, and work, in particular, helps you thrive when you live with a chronic health challenge?
FYI: The writer gave me permission to post this with her name.
Hi Rosalind! I am so appreciative of your hard work in bringing articles and suggestions to light with regard to working and living with chronic illness. I have Sjogrens Syndrome and it seems like the more I do (work, stay active), the better I feel both physically and emotionally.
However, I’m getting so tired of taking so many medications each day and I’m looking for an alternative. Do you know of any resources and stories of success that you can share? I’m very good about following doctor’s orders but I’m at the point to where I’m ready to try something altogether different; for example, special diet, exercise, etc. I’ve reached a plateau with my medications but I don’t want to go to higher doses because we’ve tried that and I have adverse effects.
I also appreciate your book, very much. I thought that I was destined to stay in the house for the rest of my life until I read your book. Now, I work again and I love my work very much (I’m a special ed. teacher). I figure that if I can do it, with determination, anyone can. Your book helped me realize that, along with my doctor who refuses to let me give up hope.
Lynda S. Chick
I’m delighted to hear that you find staying active improves your overall well-being.
What a good question you ask. Here are some questions to consider: Have you discussed that you think you’ve plateaued with your meds with your doctor? Do you and she/he talk about what you might do together to evaluate this? Healthcare professionals who partner with you are a tremendous resource and sometimes we need to nudge them to do this.
I’ve done a wide range of traditional medical procedures and meds, exercise programs, meditation/focusing practice, acupuncture and other complementary medical resources. Some are more useful than others and it’s important to know before you start how you will evaluate their usefulness.
Each of us has to do what we can to improve our overall mental/emotional/physical and spiritual self. That often means taking risks to see what works for you.
Thank you for sharing.