Chronic illness means frequently weighing the pros and cons

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