Q:  What made you write this book? 
A: More than anything, I just wanted to tell the truth about IBS. There are so many myths about IBS:  that it only causes diarrhea, that it’s not very painful, that it’s a mild inconvenience, that it’s a psychological problem, that it’s caused by stress…I could go on. It’s such a misunderstood problem, and sufferers themselves are often too embarrassed to talk about their symptoms openly. Luckily for me, I think the embarrassment wears off once you’ve had IBS for a few decades!
I wanted to write about what it’s really like to have IBS:  how it affects every single aspect of your life, how bad the pain can be, how difficult it can be to travel or to work.  But I also wanted to offer some hope, because my IBS has been much better over the past few years due to a diet and supplement regimen that works for me.

I was also disappointed at the range of IBS books currently available. The vast majority of IBS books are written by doctors, and some of them are excellent, but it’s not the same as having someone say, “I know how you feel, because I’ve been there.”

Q:  What do you think is the hardest part of living with invisible chronic illness while you are  growing up and developing who you are?

A: One of the most difficult things for me was the way that the illness made other people see me. When you turn down every travel invitation, every weekend away, when you can’t drink alcohol and can’t eat at certain places, when you cancel plans at the last minute or seem miserable and tired when you do turn up, then people begin to see those things as part of your personality rather than part of your illness. If that’s how you always behave, then that must be who you are.

I still struggle with this sometimes, and I want to scream “It’s my IBS that’s making me this way, it’s not my fault!”  But things are better now that my friends and family understand more about the limitations of IBS and how it affects me, and I hope that people no longer think that I’m naturally grumpy and dull!

Q:  At what point did you start thinking about how living with illness should impact your career/work direction?

A: I went through a terrible time in my first ever full-time job when I was in so much pain so often I thought I was going to have to quit and go back to live with my parents. I managed to struggle on with the job, but I hated the travel I had to do for work because it would always mess up my intestines.

My second job was a little better as there was no travel involved, but my ultimate goal was to find a way to work from home. I knew that even if I could just about cope with office life I was never going to be happy there – too much anxiety about access to a toilet, too many afternoons spent in pain. If I could work from home then I would have my very own toilet and much more control over my hours. I was very lucky to find a way to work from home over the internet, and this has made my life so much easier.

Q: Do you have any suggestions for others about what they should think about in doing this?

A: To be honest I realize how lucky I am in being able to work from home; not everyone has this option open to them. But I think the most obvious mistake I made, looking back, was to be so secretive about my illness at work. I tried to keep the entire IBS situation to myself, when I would have been much better off being honest about it and asking for help if needed. I suspect, for example, that I would have been allowed to stop traveling entirely for my first job if I had just explained why, but I couldn’t bring myself to do it. I should have been honest and trusted my employers to help me rather than hiding away in fear.

Q: Is there anything else you want to share here?
A:  I’d like to say to anyone with a chronic illness that I hope you are feeling well today, and that you find the strength you need to cope with whatever life throws at you, be it your symptoms, your doctors, or those pesky healthy people who like to give us so much advice!

Sophie Lee’s book,  Sophie’s Story: My 20-Year Battle with Irritable Bowel Syndrome, is available — http://www.ibstales.com/sophies-story.htm

You can also follow her on Twitter: http://www.twitter.com/ibstales

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The health benefits of yoga have been well documented for years and known for centuries in some cultures. Recent research suggests that people with chronic illnesses may benefit from yoga. Of the many different forms of yoga, some are more beneficial for certain conditions than others. It doesn’t take a psychology degree to see that the meditative benefits of yoga open the doors to a more positive outlook on life, but some of the physical elements of the exercise inspire more investigation. It may take some time to discover which one works best, but most doctors agree that yoga is a great option for those dealing with chronic issues to relax and help mentally ease the pain of their conditions.

Yoga and Chronic Conditions

Patients with chronic conditions ranging from cancer to persistent back pain are turning to yoga classes in increasing numbers. Chronic conditions can cause patients considerable stress or fatigue. This may inhibit the effectiveness of treatments and result in additional discomfort. Many doctors and health care professionals recommend yoga for exercise, meditation, relaxation, and relief of stress. Yoga basics are easy to learn and can be easily incorporated into a busy life.

Bringing Yoga to Work

Yoga can help with mental health, mitigate treatment side effects, and improve how the body handles pain and stress. All of this certainly applies at work. Chronic conditions, especially back or muscle-related pain, can make a day at the office uncomfortable and stressful. Many people think they don’t have time for yoga, that classes are too expensive, or that they’ll be too tired from work to practice. However, yoga can easily fit into your busy schedule.

Most techniques can be learned quickly and practiced for a short period before or after work or on a break. Classes can also be taken on weekends, and the techniques practiced during the week at home. Yoga classes don’t have to be expensive. Some hospitals allow patients to form unofficial yoga groups. These are often made up of patients with similar conditions, thereby establishing an additional support system for patients coping with the same difficulties.

Another way to make yoga more affordable and accessible is to form a yoga class on your own. It doesn’t have to be limited to people with a chronic condition, though that may be a means of helping you form a sympathetic community for support.

Choosing the Right Type of Yoga

There isn’t just one kind of yoga. Some types focus on movement, while others are interested in concentration and inner focus. Accordingly, a particular patient’s chronic condition might prohibit against practicing certain forms of yoga. For example, multiple sclerosis patients should avoid heat yoga, due to heat intolerance. This tendency of symptoms to worsen due to sustained exposure to heat would definitely become problematic given the increased temperature in which heat yoga is practiced.

Consider the particular characteristics of different yoga disciplines and how they might fit with the conditions of a given chronic illness:

• Hatha Yoga is recommended for beginners and is best for those who can’t overexert themselves. Gentle movements are performed while keeping the primary focus on breathing and holding poses. This form of yoga is good for stretching in a way that’s not too strenuous on the body. This would be good for patients with some forms of cancer who may tire easily due to treatment.

• Iyengar Yoga is a heavy form of yoga using blankets, blocks, and other objects. This form of yoga is recommended for those who need to work on balance and coordination, and would be suitable for patients with MS.

• Kundalini Yoga is an advanced form of yoga that may be beneficial to cancer patients as a form of exercise. The focus is on maintaining posture and breathing while in different poses.

• Heat Yoga (Bikram or Moksha) is recommended for patients with chronic pain in muscles or joints, like lower back pain. This style incorporates poses from other forms of yoga in rooms heated to about 105 degrees Fahrenheit. Proponents claim the increased heat helps remove toxins from the body while stimulating muscle and tissue.

Many patients report feeling more comfortable with a marked reduction in symptoms and side effects of their conditions after yoga sessions. Yoga tends to give patients a feeling of hope and optimism that helps make coping with a chronic condition just a little bit easier. It should be noted that yoga or other methods of relaxation and meditation are not meant to be a substitute for a patient’s regular medical treatment. Yoga will not cure any chronic illness, but it may reduce suffering and make a patient more comfortable, receptive to treatment, and promote overall health.

Allison Gamble has been a curious student of psychology since high school. She brings her understanding of the mind to work in the weird world of internet marketing with psychologydegree.net.”

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Sam Fuld isn’t a household name — unless  you’re a baseball fan.  In case you didn’t know, until a few months ago,  he “… owned the dubious all-time distinction of having batted more than a hundred times at the Major League level before recording an R.B.I. His reputation, to the extent that he had one, was for running heedlessly into outfield fences face first.”

But in the last 2 months, he’s led the American League in batting average and stolen bases.  At 29,  he’s become a superstar. Late bloomer?  Go figure.

But most interesting (at least to me) is that when he was 12 years old,  Little Leaguer Sam was diagnosed with type 1 diabetes.  And not long after a major league pitcher with diabetes visited his team to talk about how he’s managed to live a successful career even with this challenge.

“It was maybe a five-minute conversation, but it did mean a lot to me,” Fuld said of talking to Gullickson. “It was seeing with my own eyes a guy who could make it.”

Fuld’s coach has said his amazing moves on the field aren’t what has captured the imagination of fans. he said fans love Fuld not because he’s Superman — but because he plays like Clark Kent. “There are a lot of average Americans who can identify with this fellow,” says Maddon. “He’s hard not to like. He’s Everyman.”

Here’s what I get from his story :

• Play to your gifts but  do what you love.  Fuld was an economics major at Stanford but chose baseball.  I’ll bet it wasn’t because he thought it was a more prudent financial move but because his passion motivated him to work really hard against ALL odds.
• Find mentors and mentor others.   Most people don’t understand what it’s like to live with a chronic illness- – especially in a young person.  Look for those who live successfully with what you face and make them your North Star.
• Figure out your own yardstick for success.  There are many who will give you advice about what to do or how to live your life. But you’re best bet is to develop your own voice and listen to it.

I love the idea of Fuld as Clark Kent.  I’m tired of super men or women and really admire those of us who just do the best we can what what we’ve got.  What do you think?

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If you’ve been reading this blog for the past 9 months, you know that I had a bad health setback.  Last August, I had a bad fall left me with broken ribs and a banged up shoulder. It took months to figure out the cause/treatment of on-going pain which turned out was a torn rotator cuff.  Meanwhile, blurry vision in one eye led to a new diagnosis in my disease list, Possner Schlossman.  I had a history of eye disease and had been up close with pain.  And, as always happens, these things seem to trigger the multiple sclerosis symptoms — banding, fatigue, etc.

Whine, sigh.  I ‘d been living this life for 30+ years in which my health could get really bad.  But even if when it took years,  I was Ms. Optimism holding onto the faith that I’d deal with whatever came up.

The thing is, this time felt different.  I’m turning 60 in a few months and maybe that plays a part.  But the physical injuries/raw pain + another chronic issue left me off kilter – - out of balance.    After months of physical therapy and two cortisone shots, the pain was getting worse.   I wondered — maybe the years of illness were catching up and my body wasn’t as resilient.

I  couldn’t find anything resembling my usual sense of hope.  Even when I “Focused” (do you know about focusing???  It’s better than therapy and meditation — ask me about it) with my Focusing partner, I couldn’t find it.  OR resilience.  Funny thing . . . hope and resilience aren’t something anyone can see in you.  I just knew it wasn’t there. When my business slowed with several clients ending and no new ones in the pipeline, I didn’t look for new work projects as I typically do.  The juice just wasn’t there.  Do you know what I mean?

I told myself I wasn’t depressed.  I was realistic.  Really?

About two months ago, I went back to my physical therapist to see if he could help me.  I didn’t think it would help but he suggested another exercise to strengthen my motion.  I literally had to push myself to add it to my exercise plan.  Desperate, I also started doing the Tai Chi form after 35 years for my balance.   Hmmm, maybe there’s still some place called hope in there.

Whatever the reason, within a few weeks the pain changed and improved.  Each time I did the new shoulder exercise, my shoulder seemed to move better.  As the pain receded, physical and psychic energy built.

Maybe you recognize this syndrome:  I’d gotten used to feeling lousy and it was hard to redefine myself, remember that even if I was a little tired, I could probably push through it now. There were many days I had to remind myself that I was getting better.   I could push myself harder again — that I had to do it.

Slowly the nerve pain and the “banding” that came on with the shoulder pain, disappeared.  A month ago, I cooked for several hours at a time over a few days, something I hadn’t done since last summer.  I could walk  the dogs again without worry  if they pulled.   This past weekend, I  gardened hard for two days in a row.  I’m planning to kayak again if it ever gets above 60 here.  These were all on my list of things I’d have to let go of.  Not for now.

Funny thing,  I have an abundance of new clients and prospects in the pipeline and some really interesting projects, even a speaking gig that requires travel.  And I’m looking at this with excitement.  Amazing.

I didn’t think I’d feel this good in my body again.  I’m not sure I feel the same resilience, though, that’s for sure.  Maybe that’s part of  what my Dad used to call the  “aging process”.  But it sure is  good to know that my ability to heal hasn’t left completely.

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Yet,  most smokers say that they’ve tried to stop but can’t.  And I’ve heard  many people tell me  that they wish they exercised but they don’t.  It seems to be  just as hard to delete a bad habit as it is add a  positive one into our life.

Why is this?  I have a hunch that most people have a hard time seeing how their actions impact what happens to them.

If you’re wondering whether there’s truth in the value of exercise,  there is solid research to support this:

• A recent study shows that Tai Chi can help the pain of Fibromyalgia
• Exercise has been shown to  reduce the risk of cancer.
• Regular exercise has been shown to decrease the effects of chronic illness.
• Exercise can improve mood and reduce depression.

Perhaps the barrier for you is finding the time to exercise, particularly if you  hold a job .  And if chronic pain or fatigue wears you out,  it’s easy to push everything  else aside.

Work Out While You Work” offers  10 ideas for exercising at your job.

You know the platitude:  where there’ s a will, there can be a way!  Have you been thinking about getting back to an exercise program?  Maybe for the past few months… or even the past year.    Why not start today?

And, if you’ve been successful in managing to work and exercise, what’s worked for you?

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Chronic illness has shaped my career.  Kairol Rosenthal is a fellow traveler who found that illness can lead you in new directions-if you let it.   I’ve asked her to guest post this week because her information is so critical for all of us.

Kairol Rosenthal was diagnosed with cancer at 27 and discovered two days later she had been dropped by her insurance.  She has spent the last decade fighting for her own health insurance, and researching and writing Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Living with chronic illness is hard enough without the dizzying language of health insurance red tape. I wanted to make the Sept.  23 health insurance changes easier for all of us to understand, so I’ve adapted the Campaign for Better Health Care Guide with a bent on chronic illness.

Feel free to ask questions in the comment section below.  Remember, these new regulations are now law. You should hold insurance companies accountable so you can get the maximum protection and coverage guaranteed to you.

The below changes apply to plans beginning or renewed after September 23, 2010. For many people this means the provisions actually take effect when they renew their plans in early 2011.
1.  NO MORE RESCISSIONS (A.K.A. GIVING YOU THE BOOT)
Insurance companies can no longer cancel your coverage for unjust reasons, a practice known as rescission. Before, if an insurance company got hit with a big claim, they could find an unintentional error on your application (even from years ago) and use it as a basis to deny you coverage; not anymore. This applies to all insurance plans. FYI: If you intentionally commit fraud or hide something on your application, your insurance company can still rescind your coverage. Your insurance company must give you 30 days notice before rescinding coverage to give you time to appeal.
2.  RIGHT TO APPEAL INSURANCE COMPANY DECISIONS
You’ll now have the right to appeal decisions your insurance company makes about your health care (such as refusing coverage) to an independent, third party reviewer. This appeals process will vary by state and by plan.  FYI: This doesn’t apply to grandfathered plans. Learn what qualifies as a grandfathered at FamiliesUSA, Number 4 under ‘Big Picture’.
3.  NO MORE LIFETIME CAPS
Insurers are now not allowed to set limits on your lifetime benefits coverage, no exceptions. You will no longer have to worry about “capping out” on your coverage.  FYI: There are still annual benefits caps that have been raised to $750,000. These will be fully eliminated in 2014.
4.  FREE PREVENTIVE CARE
Your insurance plan must cover preventive services and screenings, without co-pays or deductibles. The full list is long and includes mammography, colorectal and cervical cancer screening, depression screening, counseling for sexually transmitted infections, many adult immunizations, and many forms of pregnancy care.  FYI: “grandfathered” plans don’t have to comply with this rule.
5.  COVERAGE FOR YOUNG ADULTS
If you’re a YA without health insurance, you can be covered under your parent’s plan up until your 26th birthday. This includes YAs who are married and YAs who aren’t students.  FYI: Young adults that already have a health insurance offer through an employer may not be eligible.
6.  NO DENYING KIDS WITH PRE-EXISTING CONDITIONS
Insurers are required to provide coverage to children (up to age 19) with pre-existing conditions, like asthma or hemophilia. This applies to families with group plans and “non-grandfathered “individual plans.  FYI: “grandfathered” individual plans don’t have to comply with this provision (though group plans do), and some insurance companies will no longer offer child-only policies.

For tips on how to cope with everything from managing medical debt to chronic illness and sexuality  check out Kairol’s  blog Everythingchangesbook.com

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The reality is that working when you’re unwell is difficult.  Even more so when you’re symptomatic with unpredictable, waxing and waning illness.   It’s no surprise that people with disabling symptoms want to opt out of the workforce.

But it is very unfortunate.   There’s  solid research that shows that continuing to work promotes better health outcomes.  It’s my personal experience — and that of many of my clients –  that continuing to work, in whatever way you can,  promotes a more satisfying life.

But can you get past the immediate challenges – - the demeaning boss, difficult co-worker, angry customers, bad environment – - and think long term?  If  you’re struggling,  don’t give up easily.  A good coach can help you learn new ways to approach these challenges.  But if that’s not an option for you, I came across some concrete ideas that you can put into action immediately.

I learned about this from Alexandra Levit, in her wonderful blog, “Water Cooler Wisdom”.  According to the US News & World Report,  research shows that chronic stress increases weight gain and obesity.   This article offers concrete suggestions to address this.  Here are the 10 points in italics and I’ve included  my own thoughts.

1. Stop eating at your desk: According to the Royal Society of Chemistry, workers who sit at dirty desks may be typing on keyboards and touching spaces that have mouse droppings. Get those infested fingers near your mouth and there’s a good chance you’ll get sick. (Reaching past my keyboard to the oatmeal, I’m thinking, mouse droppings? Don’t we convince ourselves  we have to do this?   But it can’t be good for anyone – you eat more quickly, probably don’t digest as well and can easily eat food that isn’t as good for you.)
2. Add plants to your area: A Washington State University study measured the effects of indoor plants on students performing a slightly stressful computer-based task in a university computer lab. When researchers decorated the lab with indoor plants, they found that their subjects’ reactions were 12 percent quicker on the task, and their systolic blood pressure fell. The students also reported that they felt more attentive when the plants were in the room. (I always had plants in offices — even cubicles with no light.  I felt much more connected to the space.  My brother grows orchids in his office!  Family pics are good for those without green thumbs but I have a feeling that there’s something in the growing that’s key. )
3. Improve your posture: Bad posture can cause everything from eye strain to lower back pain.  A study last year by researchers from the Teesside University School of Health and Social Care in England found that sitting on a stability ball does not provide any benefit to seating posture over sitting on the standard desk chair. A different study on the proper position of your desk chair found that sitting up straight is not ideal—rather, leaning your chair back at an 135 degree angle is best. (When my boss wouldn’t spend money for a support chair, I bought it myself .  It was worth the investment and I took it when I left.  Recently, when I was having severe arm and back pain, I hired an occupational therapist to evaluate and make suggestions for my home office.  It helped immensely!)
4. Find a way to reduce work pressure: It’s easier said than done, but it could save your life. Women in high-pressure jobs are at a higher risk of heart disease. A 15-year Danish study tracked the health of 12,116 nurses ages 45 to 64 in 1993. Those who reported work pressures as being a little too high were 25 percent more likely to have ischaemic heart disease, and those who felt the pressures were much too high were 50 percent more likely to have ischaemic heart disease. Accounting for other lifestyle factors only slightly reduced the risk. Work pressure appears to have the greatest health effects on younger nurses. (This seems ominous for the nursing profession!  But I think this  is where  strategic thinking that I often write about comes into play.  There isn’t a one size fits all stress reducing tip.  It takes time and patience to learn to manage stress – internal and external).
5. Reduce overtime as much as possible: Working three to four hours of overtime a day is bad for your heart, according to a study published on behalf of the European Society of Cardiology. Although some Americans don’t have the option of reducing their working hours—they’ve got to put food on the table, or finish a project—research shows that overtime is associated with an increased risk of coronary heart disease , independent of other factors. (I wonder how many cardiologist work 8 hour days?  I also wonder whom they studied. Would this be as true for people who love their work?   I take the message to be that too much work and too little personal time  isn’t good for our health.)
6. Exercise at lunch: A recent survey by CareerBuilder found that 44 percent of workers report having gained weight while at their current jobs. It lists reasons that make sense: Sitting at a desk nearly all day; stress. Working out during a lunch hour can make a significant difference—although just 11 percent of women and 8 percent of men make that choice. (Hmm, what constitutes “working out”?  Does it include walking? And what about working out before or after work?   For those who can’t do that, lunch hour — if you have one! — is a perfect time.  Even if you can’t get to a gym, walking is terrific.  Even in bad weather.  I had a client who walked the halls in his office building, including the stairs, building up to 30 minutes/day – it helped his energy level if not the MS fatigue. )
7. Don’t de-stress with TV at night: Much in the way that adding healthy foods to your diet is only one piece of nutritional health and must be accompanied by reducing unhealthy foods, adding exercise to your lifestyle is only one piece of physical health.  You must also reduce the amount of sitting, which is no easy move for someone with a desk job. The authors of a recent editorial for the British Journal of Sports Medicine argue that people should be encouraged not only to workout, but also to stay moving—taking the stairs instead of the elevator or taking a five minute break while doing sedentary work, for example. Too many people work at a desk all day and then head home to watch TV at night. In fact, a study of Australian adults found that a one-hour increase in TV watching increased the prevalence of metabolic syndrome in women by 26 percent—regardless of the amount of exercise those women performed. (Oops- I’m reminding myself as I write this to stand up from my desk.   I’m lucky if I remember once an hour- a timer helps.  If you don’t have an office you can stretch in, try the bathroom!  And what about walking on a treadmill while you watch tv at night or even pacing in the room for 20 to 30 minutes? I’ve done that when nothing else is available.)
8. Request a flexible work arrangement: In some parts of the world, lawmakers have jumped into the debate over flexible work arrangements. Parents with young kids also have a statutory right to ask for flexible work arrangements in the U.K. The benefits of a controllable work schedule are great, even for non-parents. A recent Cochrane review of 10 studies found that control over one’s own work hours yielded health benefits in areas such as blood pressure and sleep. (We’re a long way from flexible work being a law in the U.S. but when it happens, I hope it includes people with chronic illness.  That’s THE key factor.)
9. Keep a clean desk: A 2004 study by NEC-Mitsubishi coined a phrase for this: “irritable desk syndrome.  Researchers determined that cluttered desks were among the workplace factors making employees ill. Some 2,000 workers were surveyed and 45 percent reported that it was possible to fix the mess of clutter and paper on their desks that increased their stress at work. (No comment.  As someone who has always had a neat desk while living with illness, I don’t have anything to say on this).
10. Work on your relationship with your boss: You might not think that nurturing a better relationship with your manager would have much impact on your physical health, but it does. For one thing, when advocating for a lighter workload, a more flexible schedule, or less overtime, you’ll have a better shot getting what you want if your boss is in your corner. Also, there’s evidence that workers who feel they have good bosses appear to have a lower risk of heart disease. (YES!  I think this is the most valuable point here.  I  was deeply unhappy and anxious when I worked for bosses with whom I didn’t  get along.  It’s especially true when you’re managing unpredictable illness.  I wish I’d had help — I know I’d have done things differently.  For some this comes easy.  For others it’s a skill to learn.  But most importantly, don’t wait for the relationship to go south.  Get help – - from a mentor, a coach, a friend — and work on making it work. )

What would you add to this list – or delete?

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Do you believe that if  you could find a job, influence your boss or be more effective at work, you’d feel better?

Yet, do you feel  powerless  to take action, worried it might not be the right one?  Do you believe that the only thing you have control over are your own emotions,  so you focus on only that?

Chronic illness can do that.  Even the most determined people can feel powerless to impact their lives when unpredictable and difficult illness gets in the way.

But I humbly disagree that there’s nothing you can do.  I fall frequently.  Poor balance and numb feet (from living with multiple sclerosis all these years) must contribute.  Last night I took a really nasty fall – the 3rd in 6 months. This morning the pain was so bad I was sure I  had broken something. But experience told me it was muscle not bone pain.   I forced myself to exercise lightly (stretching, small steps, shorter time) to get  blood moving.  Reading my email, I forgot how painful it is to move my right arm.  Writing a note to a client, I realized I could even type with the arm, although I didn’t think so when I woke up!

I’m not healed – the bruises will grow and I’m limited.  But I don’t feel disabled (from these injuries at least!) or sorry for myself.

Now I’ve read (through a fellow traveler, Kathy Ibettson, who produces a terrific newsletter about  multiple sclerosis items of interest) about a study that examined the coping mechanisms of MS patients living in Northern Israel during the Lebanese War affected their disease course.

The results show that “ those who used ‘direct coping and planning’  – preparing shelter areas, adjusting medication appointments, stocking up on food and medicine – did better than those who focused on the situation on an emotional level, using relaxation techniques, support from others or prayer.”

“Patients who focused their coping on emotional well being when a more direct approach was necessary, suffered more flare-ups of the disease than patients who identified the challenges that the falling missiles were presenting, and regarded the situation as an opportunity for planning and direct action,” noted Professor  Eli Somer, study author.

This means that people who took action to improve their situation did physically better than those who relied on internal, “transformative” experience.  Although this research was on patients with multiple sclerosis,  I suspect we’re safe  generalizing this to all chronic illness.

Are you trying to figure out a new career, find a new job, tell your boss you can’t work at this level?  Do you wake up thinking:  Today I’m going to do something about this“?  But instead, bury your head under the covers.

How is that going for you?

You might ask yourself, “What action can I take?“  And if you can’t figure that out or get motivated to do that, consider this  research from Stanford Medical School that shows that people with chronic illness experience significant benefits from coaching.

What works for you when you’re in a difficult,  dis-empowering situation?  How is it going?

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Is the  health care reform bill a step toward ensuring that anyone living with chronic illness will  receive  “adequate” medical  treatment?

Or is it just more help for the healthy?

I don’t have the answer.  But I’m delighted that in the increased attention on the burden that chronic illness places on individuals and society when the chronically ill don’t receive the health care they need.

I’m no political sage. I  don’t understand  the  fine print in the new health care plan.  But I’ve heard  horror stories from chronically ill people –  clients and others – - who can’t  afford a specialist or pay for expensive medications.  Folks who are working and have some health insurance!

As I described in a recent post, you can be fired or lose  insurance benefits if you don’t disclose a medical condition before hire.  You can also not be hired or lose your job if you do.  Sorry if I’m stating the obvious, but we can’t expect legislation to prevent  unfair practices from happening.

The Massachusetts   health care reform program is  cited as a national model and there’s  the good, bad and ugly. Unfortunately, universal coverage does not entitle the chronically ill to  good or even adequate health care.

Back to my question.  Is this a  step toward better health care protection for those of us living with chronic illness – whether working or not?  At the least, we are justified in hoping so.

Will it prevent people from being fired when they disclose  a chronic illness – or even not getting health insurance?  I doubt it. There are only so many battles we can fight and much slips through the cracks.

Living with illness gives you the perspective that the unexpected and unpredictable happens.  That’s not necessarily a negative.  It can be a point from which to expand and keep hope alive.  I feel more hopeful today.  Do you?

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Chronic illness, complicated as it is, leaves many searching for a simple answer.

Lately, a tantalizing headline has gotten much  press in the social media ‘disease’ community (yes, I’m on  twitter and you can tweet me @WorkWithIllness):

“Exercise can Quiet Anxiety that Comes With Illness”.

Help me, please.  What’s the news here?   That people who live with illness also experience anxiety?  That exercise can help alleviate that anxiety?

I felt a particular sense of annoyance with this research when a client told me about an email she got from a  co-worker.  The email writer sent a link to this study with a note saying that since my client must feel very anxious  about her multiple sclerosis symptoms, this is great news.  Exercise is the cure.

My client lives with symptoms that are periodically difficult to manage and puts in a minimum of 45 hour/week on her job.  She said that although the email writer’s a “jerk”,  she wanted to talk about her guilt for not exercising and her paranoia that other co-workers  would conclude that multiple sclerosis must be her fault.   Can you relate to this?

I read several articles about this research and from what I can tell, the findings say:

• Exercise decreases anxiety for those who had not been exercising at all.
• Exercising at least 30 minutes a day is optimal.

But even if you can carve out that 30 minutes a day, that’s not the only challenge.  You’ve got to figure out what to do and where.  Vigorous exercise is rarely an option with debilitating symptoms  (cross off that spin class).  And with changing symptoms, some days even mild exercise can be a problem.

Additionally, for  those who need a class or  teacher to stay motivated, there’s the cost.   True, running or walking outside doesn’t cost a dime but weather,  like illness, is unpredictable.  Extremes of any kind – heat or cold – can affect aggravate many health conditions.  And there’s ice.  Nothing like waiting all day to take that long walk  after work but icy streets and bitter cold, especially in the dark, present real danger for you.  Not exactly  an anxiety reducer, is it?

Consider this.   When you’re given  suggestions or “solutions” about your health that you didn’t ask for, you’ve got some choices:

1. You can respond angrily that they don’t understand.
2. You can wallow silently in self pity and guilt.
3. You  can think about the suggestion, consider the source to decide if you want to respond and consider the suggestion to see if it fits for you.

For more ideas about talking about chronic illness symptoms at work, check out my Career Thrive When You Live with Chronic Illness Series.

Tell me, what do you do?  How is that going?

On another note, a colleague has asked  me to post this request: Women business owners: Have you experienced a past personal crisis while running your business and lived through it to tell the tale? If you would be willing to share your story, we would like to interview you for an upcoming book, tentatively titled “When Life Happens.” Your experience and lessons learned can help today’s women’s business owners navigate similar life events. If you are interested in being interviewed, email chris@prioritywellness.com.  Put “Share My Story” in the subject line. Chris will respond with an initial questionnaire to assess whether your story is a match for the book. If so, either Chris or her co-author Elli will contact you to schedule a 1 hour phone interview.

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