By Lisa Mark, C.P.O.

The conversation started easily enough. It was 4:30 am my time, 7:30 am at our meeting on the East Coast, and I felt as if I’d been hit by a truck. The alarm rang at 3:30 am, relatively speaking, and as I dragged my exhausted self out of bed I wondered, not for the first time, why we couldn’t start an hour later. In the conference room, a colleague said that I looked tired, and I agreed. She then suggested that I have some coffee, to which I replied that I didn’t think it would be a good idea to put anything in my stomach just yet.

Blank stare. Then: ‘But won’t some coffee help you wake up?’

As a professional who volunteers for our national Board of Directors, I am used to flying from California, where I live and work, to New Jersey, where we gather 3-4 times a year for intense three-day meetings. Our leadership is fantastic and I have learned so much from serving with some of the best minds in the industry. But physically, it is beyond tough.

And it doesn’t have to be this way.

I have asked, more than once, if we can start our meetings at 9 am instead of at 7:30 or 8 am. What a difference that would make. And the answer has always been no, because our Board is composed of people who mostly come from the East Coast, are supremely healthy, are morning people, and simply do not understand what it is like to have an invisible illness that is greatly exacerbated by spending 6 hours squashed into a flying sardine can and then having to be up and functional so early the next morning…and for the next 3 days.

I have finally come to the realization that I am working with people who, despite being intelligent and reasoned and experienced and kind, fall into the second category of our Illness Warriors Care Stand Chart: They may Care, but they Don’t Get It. Otherwise why not honor the request to start just an hour later?

I’ve tried to explain on numerous occasions how taxing it is to fly across the country and then be at my best so early, relatively speaking, in the morning. I’ve even, on occasion, been violently sick during the meeting because my body was just so out of whack. One of my colleagues still talks about the time I turned yellow as a marshmallow Peep and fled the room. I’ll spare you the details of what transpired next, but I will say that it is a good thing the bathroom was right next door to the meeting room. Another colleague routinely greets me with a boisterous ‘Good Morning! How are we feeling today?’ as if by doing so she can imbue me with some of her boundless energy. A third colleague, aware that I am not at my best in these circumstances, routinely asks how I feel and if there is anything she can do. (Yeah – start at 9 am instead of 7:30, thank you.)

Call me stubborn, but it took me nearly 4 years to accept the fact that I will just feel really, really bad whenever we meet. And I have stopped explaining to my colleagues why this is, what can be done to alleviate it, and how to help, because nothing changes. It is unfortunate, because it doesn’t have to be this way. But trying to explain to people who don’t get it, even if they do care, is an exercise in futility.

Despite the physical challenges, I am dedicated to my volunteer board position and to this association. But because of the physical challenges inherent in this job, I have learned not to say yes to everything that crosses my path. I have also learned to minimize the amount of time I spend on all things related to this position, while still attempting to fulfill my duties well.

During the last Board election, a colleague stepped onto the Board who also hails from California, is also not a morning person, and who also feels icky for pretty much the entire time we meet. And she does get it.

And that counts for something.