Is time a blur?

01Oct14

Do you experience significant chunks of  ‘lost’ time because of debilitating symptoms?  It happens, too often, with chronic and difficult health.  I recently heard it described as, “…getting lost in a rabbit hole where time is a blur”.   I’ve been there. I’ve seen how easy it is to assume that while in that blur, you’re getting nothing done.  But if you want to work,  return to work or are looking to create work that you can do,  that thinking is unproductive. In fact it gets in your way.

The reality, I suspect, is that most of us experience periods in which there is no option other than to do what you can to mitigate the symptoms.  That might mean lying down for hours, weeks, maybe months on end.  But if you’re reading this, then I bet that’s not true for you all the time.  For many, symptoms and disease process wax and wane, even if the increments seem small.

Why does this matter?  Because it’s demoralizing to think that that you’re stuck in that rabbit hole for good. You doubt that you’re capable of making a commitment to anything, especially work that pays you based on your performance.  The problem is that you don’t realize what you are doing and can’t possibly get a good grasp of what is possible.

I was speaking with a client who desperately needs to find work but she’s overwhelmed.  Her life seems chaotic and out of control because of unpredictable symptoms. She needed to know that there were some parts of her life where she could take charge so she could get a foothold.  I suggested hat since she was most upset with herself because she ‘never gets anything done‘  and ‘how can I work if I can’t even take care of my household“, the place to start was with time.

By looking at what she actually did and didn’t get done each day over a period of one month, she recognized that:

  • All days were not the same.
  • There was far more variation in her energy, capacity and abilities than she had realized.
  • She accomplished more than she realized.
  • There were two places where she could take charge:  she could set priorities and keep track of her ‘to do’ list.

 

Here’s what she did:

  1. Set a realistic (come on – – that’s important!) goal for what you want to be different in how you spend your time. By identifying this, you’re giving yourself a motivator to do this work –and a yardstick to see progress.
  2. List the activities you currently do on a regular (daily, weekly, monthly)  basis that must be done. (if you’re not sure, write it down for a few days)
  3. List the activities you do on a regular basis that you want to do but are not essential to your well being.
  4. Identify those activities you find typically do not deplete your energy.
  5. Identify those activities that you find typically do deplete your energy.
  6. Take a calendar (online or paper) and plug in the activities over a month’s time – use different colors for #3 and #4 so you can see this easily.
  7. At the end of each day, review that day’s calendar.
  8. Ask yourself:
  • What did I get done today?
  • What did I not get to do today?
  • Why?
  • What can I do differently to achieve my goal?

Play with this and make it work for you.  Remember the key is not to punish yourself about what’s not getting done.  The point is to take charge where you can.

 

 

“Slip sliding away, slip sliding away 
You know the nearer your destination, the more you slip sliding away.”  Simon and Garfunkle.

Last year, when my husband and I were in California, a friend told us about a fitness program that had been the single most important change she’d made to improve her well-being. We weren’t dissatisfied with what we were doing but how could we pass this up?

Since the teachers are on the West Coast and we live in New England, we bought a half day ‘marathon’ training session. I loved the over-arching approach to fitness, focusing on strength and agility through mindful exercise and thoughtful diet. But looking back, I was overwhelmed that day by the exercise routine specifics.

Back home, we read the materials, performed the daily workout, and changed our eating habits. When we returned to the West Coast few weeks ago and had a follow up session, we knew that we were doing the exercise routine that we’d been given, we’d changed our eating habits and we’d each lost weight.

It turned out that my husband had implemented the changes they’d suggested and his strength and bmi improved. But he’s someone who can learn by watching. I’m a more interactive learner and I need to practice and get feedback and then practice again. As I demonstrated my exercise form, the teachers showed me that I was doing them the same way I had a year ago, with the same incorrect position and form. And, sure enough, my bmi ratio hadn’t budged. So that’s why I’m lifting the same weight?

Here’s what I think happened:

  • I was given a toolbox of tactics and responded by practicing what I thought was the right way to execute it.
  • I started with keeping the mental approach in mind as I did  the exercises with thought and careWithout  anyone to give me feedback, I thought, “I’ve got it and now I don’t have to think about it anymore.”
  • I slipped into old habits of rushing to getting this over with.
  • I lost sight of what I was working to change as it gradually became fuzzier and eventually lost.
  • I slid back into  old habits which yielded no improvement.

 

Here’s what would have made a decisive difference:

  • A clear and motivating intention that had clear  improvement outcomes so I could measure and take stock.
  • A method to remind myself of the purpose and approach would have helped me to stay on course.
  • Consistent and frequent feedback  and coaching would have helped me change what I was doing  and  achieve the outcomes I wanted.

 

Do you know what it takes for you to make a change?  What does this have to do with chronic illness and careers?  Everything.

You might ask yourself: What do I want to change in my life?  What tools and support do I need make it happen?

 

 

Does anyone really question that living with chronic health problems makes it very, very difficult to hold a job?   I don’t know about you, but no one has ever argued this point with me.  Probably, because it seems  obvious to most reasonable people.

I’m not implying that we’ve got a lock on the challenges behind maintaining positive and successful employment.  I realize that health problems can have a negative impact on a person’s social/relationship life (just look at the 75% divorce rate among the chronically ill) .

But employment impacts financial health, social networks and relationships, self management and organizational skills, and self esteem.  Hmm, that’s just about all aspects of our lives.  The problem is that employment (particularly being employed by others, not self) means being evaluated on what, when and how you deliver.  When your ability to perform job tasks is highly variable and unpredictable,  delivering on your commitments can be challenging, wearing and fraught with anxiety.

I’m not suggesting we have a  ‘pity party’.  But I am crying out for a more robust conversation about this issue since it’s rarely part of any discussion on living with long term chronic health conditions.   It just makes no sense when staying employed is crucial to a person’s quality of life  (check this spot-on post in Huffington Post – note point #2).

Why am I ranting about this yet again?   Because I just listened to a client describe a series of conversations  that left her worn her out from frustration and anxiety (and she’s not a woman who typically goes there).  It struck me how clueless we all are on how to talk about this.

  • Conversations with her doctor whom she has seen 2 times:  When she told the doctor that the unpredictable and highly debilitating symptoms were making it difficult to keep her job, he told her that she couldn’t ‘give in’ to this.  When she asked what she should do, he responded: “I don’t have any idea but maybe you should find a different job or stop working altogether if this is making you sicker. ”  — which she didn’t say it did).
  1. Conversation with her boss with whom she has worked for 5 years:  She explained that her symptoms were getting worse,  she wasn’t getting an important part of her job done and she thought they could talk about options.  Her boss responded, “There are no options.  This is her job and she has to get it done.  End of story.”
  2. Conversation with her best friend:  She was crying as she told her friend how frightened she is that she’ll lost her job.  Her friend responded:  “Everyone has problems at work and you just have to keep your mouth shut and not talk to everyone about this.”

These kinds of conversations would wear anyone out .  It’s especially exhausting when you’re dealing, managing and talking about debilitating and unpredictable health.

I recently updated my booklet, “Are You Talking”  but I’m wondering, what have I not addressed?    What would you say in any of the above conversations?

 

 

 

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.

 

Accessibility
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?

For more ideas on how to talk about living with long term chronic health conditions, see my post: 5 Ideas for Talking about Illness & Performance and my booklet, Talking About It

 

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.