Several recent Supreme Court rulings have upset me lately but now I have another court in another country to direct anger towards. (Is that good news? I don’t think so!)

Last week, the Supreme Court of Canada erased what was a landmark decision award to an employee of Honda Canada who has chronic fatigue and had been fired after several years of struggling with his employers. (Court Sides with Honda on chronic fatigue firing)

I’m struck by two things.

1. The decision (who knows who is sitting on that court?)

2. How can people with invisible, unpredictable and variable disabling issues be able to work when even those with a long standing track record like the claimant in the above decision (according to court testimony, he was a major factor in the success of that local division) - can’t manage to keep their jobs?

I have a hunch that he could have used some help from someone (yes, someone like a career coach - -and one who understands chronic illness would be even better! ) around how to create better allies at work. It’s too bad that he couldn’t figure out how to manage his co-workers and supervisors so people didn’t sneer at him. Maybe it just wasn’t possible in that environment but we’ll never know. Nor will he.

But it does leave a lot of people feeling pretty vulnerable.

Rosalind aka cicoach.com

Where do you turn when you’re feeling completely alone and you’re convinced no one could possibly understand what your life with chronic illness is like?

My friend and colleague, Laurie Edwards, just published, Life Disrupted: Getting Real About Chronic Illness in your twenties and thirties. Not only does she include snippets from her own compelling life story. But she also shares other people’s stories (in full disclosure - she does quote me and I’m way past 30) who live with chronic illness.

I could have used a book like this when I was navigating those years. Many clients, women and men in their 20’s and 30’s, tell me how tough it is to feel that no one you know understands what you deal with on a moment to moment basis. And how isolating it could be … your friend is wondering whether to ask for the big raise and you’re just hoping to make it into work the next day. Or they’re wondering what bar they should go to and you’re hoping there’s a bathroom … and so on.

Laurie manages to cover much of what matters when you’re in this stage of life: the trials and tribulations of dealing with the medical system, what it’s like to be chronically ill in a chronically healthy world, and the challenges of creating personal relationships when you’re chronically unable.

It’s lively and it’s funny and a good read for those of us who don’t feel sorry for ourselves but realize that this isn’t a cakewalk either. Maybe you want to take it as your vacation reading — or just for a day at the beach.

Rosalind   aka cicoach.com

For someone who writes about disclosing chronic illness, it’s not easy for me to come out of the closet and disclose that I spend a lot of psychic time thinking about my problem with shoes. I’m no Imelda Marcos or Carrie Bradshaw but I’ve bought too many shoes to count in the never ending search for the “right” ones.

Talk to most women, and they’ll tell you that their shoes hurt. But when you have neuropathy and nerve pain with flat feet and bunions - that’s a bad combo. A shoe that doesn’t fit “right” can really HURT.

And when you’re a shoe horse, like me, what’s a girl to do?

Seems I’m not alone in the chronic illness blog world. I just read this post by Kerri on SixUntilMe about her shoe fetish . And my friend, Melissa O’Shea, formerly Development Diva at Accelerated Cure Project for MS, founded Hello Stilletto - a shoe club and fundraiser. Very cool. I missed their gala this winter because I was recovering from the bunion surgery - irony or what?

So here’s the deal. I was born with flat arches - everyone in my family has them. When I was 11, my French ballet teacher informed me that I’d never become a “dancer” with these arches because I wouldn’t be able to stay “en pointe”. (It took 5 years to convince me but he was right - I couldn’t stay ‘up’. )

That was the first time I realized that there was something I couldn’t do because of my body. I didn’t like it one bit.

Maybe I Ioved shoes because most were out of my reach. Even before multiple sclerosis, I’d have to phyically restrain myself from buying a pair I loved but killed me even while I was still in the store. I wasn’t always successful because I’d fool myself saying, it’ll get better with wear. And that was ‘before.’

With multiple sclerosis, came neuropathy (for me, it’s a lack of feeling and a burning feeling in my feet) which also creates poor balance (watch out for those wedge shoes - I tip!)

Two children later, the arch flattened even more (impossible I thought) and I went from an 8.5 to a size 10 shoe. Orthotics have helped - but only fit properly in sneakers (puma’s are good looking but not great support) or boots — and a few tie shoes (hard to find except in the shoes my 80 year old mom wears). And after an hour or so, even Pumas which aren’t as heavy as my cross trainers, make the top of my feet ache where the nerves burn.

And, over the years, the flat feet created bunions and a hammer toe — requiring surgery that has left me with a swollen toe after 6 months. The options narrowed even more.

But here’s what I’ve learned.

I can find good looking shoes that I can fit into without screaming, wear without worrying I’m hurting myself and walk in without worrying they’ll make me fall. I just have to remember my criteria and be selective. I can wear those cute low suede pumps (that are a bit tight around the toe area) when I’m not walking or standing too long )more than 10 minutes). Those sweet little ballet shoe flats are great for standing for an hour or so . But not for walking since there’s no support, I can’t get orthotics in and that creates leg pain. If I have a day where I’m in an office building all day — and have to walk and stand a lot — I bring an extra pair of shoes so at least that part that hurts gets a rest.

I’ve learned that I can have what I want, with modification, as long as I pay attention. And I don’t need to allow it to rule my day. Sort of like what it’s like living with chronic illness on a daily basis.

Check out the June blog festival - How to Live with Chronic Pain - the theme is summer and vacation.
Rosalind aka cicoach.com

It’s hard not to blame yourself if chronic illness leaves you feeling as if you have no choice but to stop working. But the fact is that sometimes you just can’t get out of bed on a daily basis and that’s usually what work requires.

Milwaukee morning dj (WLDB-FM 93.3), Ellen Stout, 54, is retiring from radio because fibromyalgia makes it hard for her to get to work each morning (Chronic Illness Forcing Veteran Radio Host into Retirement).

Stout’s boss wants her to continue working at the station in some capacity. But according to the article, her reply is that God is telling her only one word right now and that is: rest. That sounds like she’s getting one powerful message.

The fact is that any of us who live with chronic illness know that there are times when you just can’t keep a schedule of any kind. Maybe you’re not in the hospital but you’re not good for much else other than lying in bed because pain or fatigue puts you down for the count.

So why am I writing about this? Because I worry that at some point, Ms. Stout could feel better enough to want to work in some way. And, because she’s 54 that’s not going to be so easy. In The New York Times Week in Review this past Sunday, the article (For a good retirement, find work. Good Luck) cited statistics about the need to work longer because of the shrinking dollar and possible social security funding.

But additionally, the article also said that when you have to look for a job and you’re over 50, your prospects diminish severely. This is not surprise to anyone, like me, who works with people around career issues. What is particularly significant is that many people with chronic illness choose to stop working because they’re fed up with pushing so hard for so long. They’re worn out. The problem is that there’s often not enough of a safety net to fall back on and the assumption that you can just find another job when you’re ready is unrealistic.

I’m not saying Ms. Stout or anyone else shouldn’t stop working when they’re body is screaming the message. But I urge caution — leave with the message that you’ll come back, part time when you’re able to. This is one door that might not open again if you close it too shut.
Rosalind aka cicoach.com

When we were living in our first apartment, my husband would ask me, ” Why do we have to wash the kitchen floor once a week if it doesn’t look dirty?”

How do you answer something that seems so obvious?

When people tell me that summer vacations is a source of stress - I think of the kitchen floor syndrome. It starts this way:

“How could I take a vacation when I can barely make it through a day?” (or, Why clean the floor if you can’t see the dirt?)

“I couldn’t possibly take time off from work when I’m already so behind.” (or, Why clean now when you can do it tomorrow when it’s really dirty?)

“My boss (my co workers) would be furious if I take vacation time when I’ve already missed so much time because of illness.” (or, Why clean the floor when the entire house is a mess?)

Well, maybe all of that is true. But, do you want to be that person? Ask yourself, do you believe that your body, your mind and your spirit could use a break today?

Sure a trip to Paris sounds grand (though, who wants to get on airplane with those delays, anyway?) But, even a short drive to somewhere different - for a few days in a row - instead of going into work — is a break from your routine and some new juice in the old engine.

You know, as I do, that when you live with chronic illness and you feel like you’re always coming from behind, it’s easy to forget that you also need “fun”. I know - I’ve done it. The first few years that I was working for myself, I never took a real break. I always brought my laptop with me and answered email, wrote articles and generally continued to think constantly about work. I’d get up early in the morning so my family wouldn’t notice. I told myself I was doing it because I loved it.

Then, a few years ago, my business coach (yes, I have one, too!) asked me if I really thought I had to be working when I was on vacation - or was I doing it because I was scared not to? That’s when the lightbulb went off. I was working so hard just so I could to prove to myself that chronic illness was not going to get in my way of building a successful business. But I was slowly and surely wearing myself down doing it this way.

Living with an illness means that you can work and can take the time to regroup and regenerate. Sometimes we have to remind ourselves that if we wait too long to clean the grime, we won’t be able to see the color of the floor. Or remember who we are.

Rosalind aka cicoach.com

YES!  Lauren Shuler Donner, A -list producer of Pretty in Pink, St. Elmo’s Fire and X-men series among others, lives with Lupus. What do you KNOW?

After years of hiding this illness ( as well as breast cancer) , she’s “come out”. “I was afraid no one would hire me, and I also felt it was deeply personal. It was nobody’s business. Now, of course, my feelings have changed.”

What changed her feelings? I haven’t a clue but it’s a good thing. Those of us with chronic illness — who know what it’s like to fear we won’t get hired or lose our job because of illness — can only benefit from this public declaration. Ms. Donner is right that it was nobody’s business but I, for one, am glad that she no longer feels that way. By making this news public, she’s letting the world know that even with chronic illness, she could get her job done…. and then some.

As another blogger in StateandLake said, It is the only way we can learn, be inspired, and find ways to overcome or at least live comfortably with our ongoing ups and downs.

Most of us won’t accomplish what Lauren Shuler Donner has. Nor would we try.

But if I could interview her, I’d ask her:

Lauren, What do she think helped you achieve what you did? Did you have a boss that allowed you to have a flexible schedule? Were you able to pick and choose when you could work? Were you able to take time off when you needed to? How did you get through a day when you felt like crap? Was there anyone who mentored you around balancing work and bad health?

I have a hunch the answer would be NO to those questions and that Ms. Donner probably was fortunate enough - for whatever reasons - to be able to work through her difficult times with illness. It’s safe to say that she only “came out” once she was solidly established.

I am not criticizing her or her timing. I’m delighted that she took this very personal risk. But here we go again - a woman (and probably a man would have take the same approach) afraid to say the truth about physical health out of fear that people would make assumptions.

As I said, hooray that she has told her truth. It’s tiny steps to change attitude about what people with chronic illness can do and what they need to do it  What’s it going to take to change the  environment we work in?

Rosalind aka cicoach.com

If you think that it’s only the adult work world in which a chronically ill person struggles to around being “successful”, read this article (When Schools Punish Sick Children Who Miss School). Kids face the same crap (sorry but it made my blood boil).

Here’s an example: A parent wrote that her child completed all her assisnments (getting A & B’s) but because she didn’t attend school the required number of days (due to her well documented chronic illness), the school wouldn’t allow her to advance in grade.

The good news is that there are laws designed to protect her. The bad news is that her parents would have to fight this ruling — which takes time, energy and resources.

I can only hope that when this kid grows up, she’ll be able to speak up for herself at work. She’ll know what she needs to do her job well and she’ll know how to talk with people so she gets it.

The goal is to persuade people of your position so they’ll give you what you’re asking for without alienating them so you don’t have to use force (such as through the law) which can damage relationships.

Marci Alboher writes about persuasion in her blog, Shifting Careers (Come On, Let’s Talk About Persuasion) . She cites an article in New Scientist offering, “eight ways to get exactly what you want” . It offers some interesting ideas based on new scientific research. (But I’d suggest that before you use mimicry, test it out. If it backfires, the results won’t be pretty!)

Alboher also referred to a Wall Street Journal article (Art of persuasion is Key) that said that more than ever, people need this in the more team-oriented work environment. Everyone needs to be skilled in persuasion, not just people on work teams. In fact, I think people who live with chronic illness (and work with others) should get trained in persuasion upon getting a diagnosis.

Do you find yourself struggling to convince people of your position, trying to get them to do what you want or need, particularly when it isn’t obviously aligned with their own wants and needs?

Maybe you want: Your boss to recognize that you are meeting performance expectations (even if it doesn’t always look that way). Or your supervisor to understand that cross training will ensure that deadlines get met when you’re not well. Or your colleague to accept that you have to come to work later every day but you’re always available when necessary. All difficult positions that require persuasive technique.

Finally, an all time favorite is a book I first read when I was trained in mediation, Getting to Yes, by Roger Fisher. It’s a must read. You will also find my Career Thrive Guidebook, Are You Talking? filled with helpful strategies for persuasion.

Rosalind aka cicoach.com

Occasionally, I interview people about their “story” because I think it would be valuable for you to hear a different take on these issues - other than mine.

Today’s guest is Leslie Rott. She is 22 years old and was diagnosed with and is being treated for rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) in 2008. She had been dealing with various health problems for several years before receiving her diagnosis. Leslie is going to be a second-year graduate student in the sociology Ph.D. program at the University of Michigan. She recently started her own blog, GettingCloserToMyself . Leslie’s story — and so many like this - is why I created the home study system, Working With Chronic Illness Workbook.

Rosalind: When you got your diagnosis, did you think that you might have to change your career plans? If yes, why and in what way?

Leslie: At first, I did not really think about much else other than surviving until tomorrow. But then I started wondering if I could continue on the route of going to graduate school and becoming a professor of sociology. I think when I first got my diagnosis, I was not thinking realistically. I was thinking that I might have to leave school because I was feeling so bad and exhausted all the time, but I do not think I was really thinking that far ahead at the beginning, in terms of what the rest of my life was going to be like. My first instinct was to keep my life as normal as possible, and for me that meant staying in school and staying on the path that I had in mind.

Rosalind: Since then, have your ideas about your career plans changed? If yes, why and in what way?

Leslie: I question everyday whether my career plans are going to make sense now. But I am still trying to acclimate all parts of my life to my illness, so eventually I will have to face the career part of it. I’m the type of person who is really hoping my decision will be based on a doctor telling me that I’m working myself too hard and that I need to do something else. But the realistic part of me knows that, that is not going to happen and I am going to need to decide for myself. I’m mostly worried about the early years of being a professor, when you have to get a job and work hard to make tenure. That’s hard enough for most people without having the added layer of illness to complicate things.

For now, I am planning to stay in school, which will be at least four years toget my Ph.D. From there, while I am hoping to get a job as a professor, I have not necessarily made my mind up yet. I have put in way too much time and effort already to throw all of the hard work away. On the other hand, though, I guess I have to do what is best for me. With grown up diseases come grown up decisions.

Rosalind: Do you want to/ expect to keep working - and if yes, what do you think would make this easier for you?

Leslie: For me, I think that unless things get completely unbearable, I’ll continue working because that is who I am. And hopefully, whether my future career is in the field I had intended it to be or not, I will love what I am doing enough to make even the bad days worth getting up for.

Rosalind: How would you describe your level of motivation regarding school/work — and has living with illness changed this idea of yourself?

Leslie: That is a really good question. Before my diagnosis, I was all school, all the time. School was completely who I was. I think, in some ways, I had lost sight of the really important things. My motivation for school has definitely changed. I learned to let things go. I was, surprisingly, able to get good grades last year, despite everything that was going on. But I had to listen to my body, and if that meant not giving 100%, I had to accept that, even if I did not really want to. At least in the job I am at right now, I work really hard when I am there, but I do not have to really bring it home with me. For me, school is not like that. And I have a feeling my eventual career will not be as easy to turn off, either. This is the part that I really struggle with, listening to my body and knowing when to put other things aside.

Rosalind: Do you think that getting the diagnosis at the point in your development that you did (just starting graduate school I think?) was a particularly easier time or harder than at another developmental point (such as already being launched in a career and having a family perhaps or maybe being in your adolescence.)

Leslie: I think it was probably harder for a lot of reasons. I was about to live my dream and start to live on my own for the very first time (renting an apartment, paying bills, etc.). In some ways, I think I was naive in thinking that everything was going my way. And then came starting to feel awful all the time and knowing that something was very wrong with me and that I had to deal with it.

Being on my own for the first time, I did not have the support around me that I was used to. Luckily, my parents live only about an hour away, but I have had a lot of experiences over the last year on my own. Going to various doctors, getting diagnosed, blood tests, I have gone to on my own. I wasn’t used to doing before, and definitely not to the extent that was necessary in order to find out what was wrong with me.

I’ve also dealt with doing the everyday things by myself. Even when it was difficult to get out of bed, I took care of my apartment and my self. Maybe if I was married, or in a serious relationship, I would have more immediate help and support.

On the other hand, I’m well aware that not everyone is going to accept your illness. Having an intimate relationship fall apart because of this would have been too much to handle at this point in my life. Now I can ease people into it, I guess.

I know that I will always have the unconditional love and support of my family, but it’s hard to envision the people I still have yet to meet. I didn’t find my prince charming pre-diagnosis. Hopefully, post-diagnosis, he’s out there, proving that there is still some good in the world.

It was also hard because I had just met a lot of new people in graduate school and it is hard enough to meet new people when you know who you are and what is going on in your life. And suddenly I didn’t. And then you have all these ups and downs anyway, plus medication, and I was worried that people were never going to know the “real” me. I am still trying to build a social life. A more established person does not really have that problem.

That said, being hit with something like a chronic illness is never an easy thing for anyone. I just think that if you are more established and settled, more secure in where your life is at that point, your train does not get completely derailed and thrown off track. Also, I was not only trying to prove to everyone else, but also to myself, that I was self-sufficient enough to be on my own, to be considered a bona fide adult. And then, boom, suddenly I worried that I would not be able to take care of myself and that my newfound freedom would suddenly be taken away from me. The one good thing about not being in an established part of my life is that there is less to completely re-work and more to adapt as I go.

If this had happened at earlier point in my life, it probably would have made things much more difficult. I am not sure I would have been emotionally mature enough to handle a chronic illness and all of its repercussions. It probably would have vastly altered the trajectory of my life. It’s hard to say, but I probably never would have left home to go to college and beyond that, it is hard to say if I ever would have even considered graduate school.

Rosalind: What made you decide to start a blog?

Leslie: At first, it was started for purely selfish reasons. I had to tell the same stories to people in my life over and over again and it was exhausting. I couldn’t remember who I had told what. I thought it would be a good way to keep people updated on what was going on in my life. I also realized that I wrote things a lot better than I spoke them. There is a lot of misunderstanding that I received from other people concerning my situation and I felt like no matter how many times I said the same things, there were still people that weren’t getting it. I also wanted to get my story out there because I thought it was an important one to tell. I realized that if I could save someone the trouble of going through what I did, it would be totally worth it. As I’ve done more writing and more exploring of the world of chronic illness blogs, I’ve come to realize that this is definitely not just about me. There are a lot of us out there and I think we can really help each other. Originally, I hadn’t intended for my blog, Getting Closer to Myself (http://gettingclosertomyself.blogspot.com), to be so completely illness focused, but the more I wrote, the more serious the tone became.

Rosalind: Do you think that you would benefit from having more help around creating a career when you live with chronic illness - and if so, what kind of help would be most useful?

Leslie: For me, since I have not actually had a bona fide career yet, I think that it would be helpful to have guidance in this area of my life. Most specifically, I’ve had a difficult time with disclosure, in general, but especially when dealing with school and the job that I hold currently. I know that we cannot predict how everyone in our lives are going to react to our situation, but it would be helpful to be on the ready for whatever reaction comes our way.

I also think that, going through the type of education that I am, I have sort of been conditioned to think that working all the time is the only way to be. I think until this point I have planned my life around school and work, and now I have to plan everything in reverse. Right now I’m working a 40-hour a week job and it has been really hard to get used to. It made me realize that for people in my situation, your normal, everyday job is not necessarily the best suited to my needs.

Right now, as a graduate student, who needs to work in order to pay rent, I am doing what I have to do. Clearly, though, even though I am sitting at a desk all day, it is taking a lot out of me. But right now, I am doing what I have to do. It would be nice to know how to deal with the practical concerns – working enough to survive, working enough to have health insurance, if that is an issue, working enough to feel fulfilled without burning yourself out.

I think a lot of us go from being really productive people to having to examine and reevaluate many parts of our lives. I still want to be a productive person, but in a different way than before. And I guess I have not discovered how best to do that yet – whether that means changing careers, finding a job at a place that will support my unique needs, becoming my own boss, or whatever other possibilities exist.

Rosalind: Is there anything else you want to share with my readers?

Leslie: For me, there was a year period between when I really started feeling bad and receiving a diagnosis, although I realized later that I had been having periodic symptoms for several years. I think my experience was quite “typical” of others with autoimmune diseases.

At first, doctors met my symptoms with skepticism. It is a very long process, and by no means easy. The major thing I have learned is that no one knows our bodies better than ourselves. I’m only starting to realize that living with illness is an ever-evolving process. Adaptation to and acceptance of illness is not something that happens overnight. But illness does make you realize the importance of the decisions you make for your life and that you have to make those decisions for yourself and no one else.

This is a big step for me, doing this interview. Maybe some people out there are thinking, wow, big deal, she answered some questions. The first thing my mom asked me when I told her about this was, “Are you sure you’re doing the right thing?” And I didn’t even really have to think about the answer to that. While others in my life might deny what’s happening, it’s time that I step up to the plate and acknowledge it, make it real for myself. And I think this is the first step to that. The blog has sort of been a progression to this point.

Rosalind: Thank you for sharing this, Leslie. As a mother (and a career coach), I can appreciate your mom’s concern. And for both those reasons, as well as a person living with disease myself, I appreciate your desire to “come out” with this. Have any of you had similar — or quite different — experiences to Leslie?

FYI - Many valuable tools and suggestions around these issues are in my home study system: Working With Chronic Illness Workbook! Filled with ideas about how to figure out what career would be best for you in the long run - the workbook gives you the tools to make good decisions that work for you.

Rosalind aka cicoach.com

There is nothing sexy or headline-making about chronic illness. It rarely kills a person — but it sure can curtail a life. Ted Kennedy was presented with what seemed liked larger than life issues that forced him to make quick decisions and take risks. All the more inspiring. And Kennedy, as do so many celebrities (see Patrick Swayze), continues to show us that a stiff upper lip - the thumbs up attitude will prevail and win.

But what if the story were that Kennedy is slowly losing his ability to use his legs and experiencing loss of bladder control? That he’d be able to go on working but he’d have to work shorter days and walk with a cane. Would we still get excited about his “fight”?

Living with the drudgery of chronic illness doesn’t yield quotable lines but there can be some funny stories - just ask Terri Garr who lives with multiple sclerosis.

“Another big problem is memory loss,” she’ll say with a pause. “Now, what was I talking about?” Every so often, she says, her doctor asks discreetly about sexual functions. “I don’t know,” she sighs. “I haven’t been invited to any lately.”

What’s not funny though is living with chronic illness can mean that too often you’re explaining why you “can’t” — to someone. And it’s easy for that to be read by the other person as you’re taking the easy way out — or you’re depressed and that’s the problem.

“N” is struggling with her father’s inability to accept her choices. She can’t direct musicals and teach drama to inner city children — as she did -because she’s in too much pain to be that active. FIbromyalgia just knocks her out and she needs a different career. She’s given herself a year - working very part time to pay the bills and using her savings - to create something new that will be a plan for the long run. Sounds smart, no? Not sexy, not funny but the best thing she can do.

But her father can’t understand how she can do this. He’s worried that because she’s single without anyone to support her, she’ll end up destitute. Whenever he has a chance, he asks her: When are going to get a real job again? What’s the point of working with a career coach if you don’t have a job yet?

I was in the opposite position from “N”. My parents wanted me to stop working. They believed that working made me sicker, I had two children to take care of and a husband to support me. I was on the defensive a lot about the choices I made — and given that there weren’t role models out there to point to, it was lonely!

I’ve written plenty about talking about chronic illness in the workplace — in my book Women Work and Autoimmune Disease: Keep Working, Girlfriend! and the just published Working with Chronic Illness Workbook. But this kind of talk is different.

You’d probably have a better shot at rolling the dice in Las Vegas than knowing the odds are your decisions are “right“.

How do you talk about the decisions you make - regarding work - with the people who love you but don’t understand that there’s nothing about living with chronic illness that is a quick fix?

They’re struggling just as much as you with this thing that doesn’t get better quickly. And even worse, that they can’t even see. What do you tell them?

Rosalind aka cicoach.com

This past weekend, my husband’s family gathered at our house for his youngest brother’s (there are 4 “boys”) graduation (at 44!) from U Mass Medical School (Worcester, MA).

A big deal, no? But it’s late Spring and as is typical for me, multiple sclerosis (MS) symptoms are flaring, with some pain and some fatigue.  Not dis-abling but slows me down.

‘Tis true - there’s no substitute for experience. I had a hunch that a weekend of standing, walking and staying up late would be too much for me this time of year. I So I chose to go to the party at his home and skip the long day of graduation events.

The thing is, I “could” have done it if I had to. But this is a very busy time with my book publication and other work stuff.  I didn’t want to put out all my energy on the weekend and start the week tired.

There it is again - having to weigh pros and cons of doing something.  What I wouldn’t give to put it on my digital scale and get an objective and decisive answer for best choice!

But this was relatively easy.  The family understood. Over the past 30 years, I’ve shown up when it counts.  Even better -  they know and love me. Not so true of clients, colleagues or your boss.

The other day, I was in a fairly unusual position.  At my client’s request, I was discussing his performance review and job description with his supervisor. “D” has multiple sclerosis.  One year ago, he requested and was granted to work from home two days a week.  Thus he avoids the daily 45 minutes commute which he believes fatigues him  — fatigue creates cognitive problems for him that impair his work.

D doesn’t think the schedule change has impacted his ability to do his job. But in his recent performance review he got the sense his supervisor doesn’t agree. Which is why D asked me to speak with him. He thought his boss wasn’t being completely honest with him because of his illness and he was worried that he was missing something.

D was right. His boss is upset. He said that on Monday mornings, a day D comes to the office, he’s often very tired and seems to make more errors.   And then often D casually mentions that he spent the weekend snow blowing out the driveways for his elderly neighbors or painting his house. His boss feels angry. He ’s wondering what D’s priorities are and maybe this isn’t the best solution.

I understand D’s boss’s frustration. In his mind, he’s bending over backwards so this guy can keep his job. On the other hand, does he expect that D won’t do anything else and save all his energy for his job - that he’ll have no other life? I think in some ways he does. Although he’d never say that because as the responsive, caring person he tries to be, he knows that’s not fair.

In the end, this won’t work unless D can get his job done without making mistakes. The problem isn’t his different schedule or that he is painting his house. The problem is that he’s making mistakes. And unless he can do this job without making mistakes, he’s not going to keep this job.

D has to figure out if he can do this job and be successful and learn not to talk about his life outside of work. He has to get better at weighing the pros and cons of conflicting desires. In his case, it’s going to be even more isolating and emotionally difficult because he’ going to have to filter what he says even more.

Do you find this happens to you? Do you filter what you tell people? Or do you figure it’s your life and they’ve got to realize you’re just doing the best you can?

I love the way these issues are so clearly explained in this article in The New York Times interview of Leonard Jason.  A  professor of psychology and on numerous Chronic Fatigue Syndrome boards and committees,  Jason debunks many of the bad ideas people have about this little understood  illness.

Q: What is it about chronic fatigue syndrome that makes it so challenging for many people — patients themselves, doctors, family members?

A: Fatigue is a universal human experience, and in fact most people are very hard-working and feel fatigued a lot of the time. And severe fatigue is one of the most common complaints that people bring to their physicians. Because so many people have general fatigue and continue to function, they think, “What’s that? That’s not a disease, it’s just a fact of life.” So there’s a perception both among medical personnel and the lay public that it’s something that you push yourself through, you deal with it. There’s a tendency to think, “Well, you’re stressed out, get some better sleep, take some antidepressants.”
Amen.

So, what do you do to manage how people respond to your inability to “show up”,  or get the job done because you’re too tired or in pain?  I’ve created a series of steps you can use to  make this easier  in my Career Thrive Guidebook, Make It Happen- Chopping down the decision tree.  Buy it alone, as part of the Career Thrive Series or as part of the Working with Chronic Illness Workbook Home Study System).

Rosalind   aka cicoch.com