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.

Flexible Scheduling
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.

Get Physical
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.

Relationship Management
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

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dear Lynda,

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.

Warmly,
Rosalind

 

 This is a Guest Post by Jessica Socheski.  

In 2007, Sheldon Cohen, a professor of psychology at Carnegie Mellon University, revealed that stress can be a factor that contributes to and worsens illnesses, “… in particular depression, cardiovascular disease and HIV/AIDS.”

The links between depression and stress prove complex. In some cases, a stressful event can lead to depression, and other times, the stress caused by enduring a chronic illness can lead to depression. Science Daily reports that depression is common “among people who have been diagnosed with a serious illness, suggesting that physical disease itself is a stressful event that can lead to depression.”

Life stress is serious, too. Chronic stress, which often comes from the daily grind of the workplace, can play a part in bringing on cardiovascular illness like coronary heart disease. This relationship has been clearly revealed as stress wears on the heart by raising blood pressure and inhibiting the body from fighting off illness.

Less clear is the connection between HIV/AIDS and stress. However, there is a consistently demonstrated link “… between stress and the progression of AIDS.” In Cohen’s article published in the Journal of the American Medical Association (JAMA), it was reported that “…changes in the autonomic nervous system caused by stress may also contribute to disease progression by influencing the replication of the HIV virus.

 

How Does Stress Impact Disease

Researchers are still discovering the role which stress can play in a chronic illness. The impact of stress might take place behaviorally because people under severe stress tend to:

•Sleep less

•Eat poorly

•Smoke more often

•Exercise infrequently

•Not follow through with medical treatment and doctor’s advice

But stress might also surface biologically. Stress can trigger the body’s endocrine system to release hormones which would affect the body’s other systems, “… including the immune system,” notes Science Daily .

 

Identifying Your Stressors

Stressors are things or events which interfere with a personal goal. And the more highly a person values their goal, the more stress the person will feel when the goal comes under a threat. For example, a student who values arriving at class on time (the goal) will become stressed when stuck in a traffic jam (the stressor).

If reading the possible effects of stress has you stressing out even more, take a moment to breathe and relax because stress is a natural and normal part of life. Your ability to feel stress means that your body is reacting to its surroundings properly and adapting to change just the way it is designed to.

Everyone experiences stress and its symptoms. It is when negative stress becomes common and intense that it can prove harmful to a person’s health. When dealing with a chronic illness, it proves especially important to protect your body from anxiety by identifying the stressors in your life and deciding how to handle them.

Stress can be caused by any number of events and worries including financial, work related, emotional or a life crisis to name just a few. With recent changes in health insurance, many people are dealing with high stress over their healthcare plans. Other events which can trigger stress in the mind and body include:

•Dramatic life changes such as divorce or unemployment,

•Disasters including a hurricane, earthquake or disease,

•Daily hassles such as traffic jams.

 

Can You Fix Stress?

“Stop stressing.” That is a lot easier to say than to actually do. Stress often creeps up stealthily before we realize the toll it is taking. If you are dealing with a chronic illness, you  already have plenty of stressors in your life and deal with them on a daily basis.

There is no one solution to solving stress. It is also not possible to eradicate it completely.  Fortunately, it is possible to learn how to manage stress and help your mind, emotions and body to recover from stress to fight illness and work towards healing.

. Helpguide.org recommends the four As:

•Avoid unnecessary stressors by choosing between the “‘shoulds’ and ‘musts’ on your to-do list and steering clear of people and situations” that cause unwarranted stress.

•Alter situations which can’t be avoided. Use assertiveness to deal with problems rather than living in fear of them. Vocalize concerns rather than “bottling up your feelings and increasing your stress.” Work to find compromises to help an issue or circumstance.

•Adapt to certain stressors with a new mindset and positive outlook. Refocus on the big picture and take time during the day to be thankful for the little things in life. When possible, just choose not to become upset about things that really don’t matter in the grand scheme.

•Accept things that you can’t change and look for the possible positives like personal growth. Accept that you aren’t perfect, and neither is anyone else. This will help you give grace to both yourself and others.

Along with mental ways to approach your stress, you can also work on physical aspects like setting aside quiet time to relax, exercising regularly, eating healthy meals and making sleep and proper rest a priority.

Once you learn to recognize stressors and defend yourself against unnecessary stress, you will be better able to improve your outlook and your health and work with your body towards recovery.

 

Jessica Socheski is a freelance writer who loves researching healthy living. You can find her at The Teaching Box or on Twitter.

 

Image from www.bestthinking.com

 

Today, I’m sharing 3 sites that I hope will stimulate your thinking.  Of course, all are related to living with health challenges, though none are   specific to career. But doesn’t your ability to keep working tie directly into your efforts to manage difficult health?

Choosing Wisely, Massachusetts encourages physicians and patients to discuss medical tests and procedures that may be unnecessary, and in some instances cause harm.  Part of the national Choosing Wisely Campaign, sponsored by ABIM Foundation, this site is produced by Massachusetts Health Quality Partners (full disclosure: I chair MHQP Consumer Health Council and sit on the Board of Directors).  This is useful wherever you live within the U.S.  I think that this has tremendous potential for changing the way we think, talk and ask for our healthcare.  Consider this: How much work time have you lost on tests or procedures that yield no new action or worse, are harmful?  Can you imagine what might change if patients and care providers understood why and how to have these conversations?

‘Living with an Invisible Illness’  was written by a student and published in The Michigan Daily.  It describes her efforts to get a college education while living with that insidious thing we refer to as invisible illness.  The writer describes the woefully inadequate services that are provided, her concerns and her frustration.  Reading this is a glimpse into the lack of support and systems that are available — and this at a truly great school (my daughter, niece and nephew are alums!) .  FYI –  I developed my Kickstart Your Career Program for just this reason. College career advisory programs are unprepared for the challenges facing those who live with unpredictable health problems.  If you know a young person in this situation, send them to my website.

A former client sent me “Maybe It Makes Us Worse”, suggesting I might want to comment or write about it.  I’m doing both.  Published in the Belmont Patch Slice of Life column, the pieces refutes the phrase, “That which does not kill us makes us stronger” (Friedrich Nietzsche).  The writer says that she has always hated this expression (ditto here).  She describes two near death experiences that did not make her stronger.  But the major point of the article refers to people who live with chronic illness, something that rarely kills but, she believes, doesn’t make us stronger, either. “These people are often exhausted, acquiescent, discouraged, frustrated. But I know of no one who would claim that their chronic illness has made them significantly stronger.”   Do you think living with illness has depleted or toughened you?

 

 

If you live with debilitating chronic health problems, just the idea of setting New Year’s resolutions can be irritating, even infuriating.  Over the past 24 hours, I heard this response from two people, a friend and a client.  Both live with very difficult to manage, debilitating health problems.

My  friend told me, in a tone of real sadness, “Each day challenges me.  Why would I even dream of creating more work for myself?

Sounding quite angry,  my client described  listening to colleagues share their New Year’s Resolutions at the ‘water cooler’.  “Not me. When I was healthy, I looked forward to New Year’s and making yearly resolutions.  I thought I could do whatever I set out to do.  Hah – that was then  Now, I’m mad just thinking about this.

I can see their point.  Life isn’t as straight forward as they once thought it could be.  But aren’t these yearly ‘resolutions’ designed to encourage people (healthy and not) to create intentions for what they want their lives to be?  Isn’t it what we, who live with real challenges daily, need most?

The thing is that doing it once a year doesn’t do the trick, for anyone.  Within a few days, weeks or even months, you’ve forgotten what you thought was important at that moment.

I’ve found that living with chronic illness presents intense and demanding challenges and clear resolve is more valuable than ever.  I’ve learned that I need to know what I want to do, what I want to be thinking about, and what I want to accomplish, whether I achieve it or not.  This resolve shifts me from a place of what isn’t to a place of possibility and hope. It is my personal daily workout routine, my exercise in building and maintaining resilience.

Today is the first day of the rest of your life.  What will you make of it?

 

 

Does the holiday “season”  seem endless and overwhelming?  Is it filled with events you’re expected (and/or want) to attend, shopping for gifts, and too much bad eating?  When you live with a debilitating chronic health condition, and you’re already in a perpetually tired state and feeling the pressure that comes from not having enough energy to accomplish what you ‘should’,  this time of year can put you ‘over the edge’.

For 35 years, I’ve struggled to manage expectations and what I can deliver.  It’s gotten easier as I’ve gotten better at it but it’s never simple.  And for the past 12 years, as I’ve worked with people with chronically poor health, the stories I hear this time of year share familiar themes.

Everyone  complains that there’s too much to do and not enough time.  But don’t they realize what it takes for me just to show up?   I’m supposed act festive but I feel different, alone and angry.”

People make snide comments that I’m not showing up for the Holiday parties.  Don’t they know I’m not well?  They don’t seem to care enough to even try to understand.”  

 ”My  supervisor dumped a new project on me yesterday that he said must be done before I start my vacation next week.  Doesn’t he know how much pressure I’m under already?  I wanted to tell him that I’m already behind and I can feel that there’s a “flare” coming on but he didn’t seem interested.”

Do you notice that each scenario involves communication?   The specifics vary but inevitably it boils down to what is NOT said and the frustration that simmers from this.

I’ve seen that when a person learns to take a more strategic approach to these kinds of interactions,  it is possible to make the communication more effective.  You can get more of what you want and need and feel better about yourself.

Try this.

Ask yourself:

1. What I want and what is possible in this situation?

2. What do I need to know to figure out what action to take?

3.  What do I need to say to make that happen?

Over these past 12 years, I continually learn from my clients.  One thing I’ve seen is that when you adapt a strategic approach, as laid out above, and then apply specific tactics to what you say and do,  you can make big improvements in your life.

For that reason, I decided to revise my Booklet, “Are You Talking?”, in my Career Thrive Series.   I kept what worked and added more chapters and new ideas. I plan to revise the other Booklets at some time and the price will most likely go up.  But it’s still priced at $10.  Now, that’s what I’d call good value for your own holiday gift.  Treat yourself!

 

 

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.