It was another hot marathon day here in Boston this past week. I don’t know about you, but I don’t run anywhere anymore - numb feet /bad balance makes skipping a challenge.
And there was another race in the marathon for President. Wouldn’t it be something if one declared, “I can’t do it anymore. I’m just too tired!” Oh and place your bets here for who will be the first to talk about chronic illness as an issue in this campaign …
In my last post, I mentioned the article about our book (and my business, cicoach.com) in the New York Times Online Business section this week. Hooray for press and attention to these issues. I got lots of email from people who saw the article — and it indicates that we (the chronic illnesser’s) are barely limping along — not even keeping a steady pace?
Here are two :
Hi Rosalind, Since I’m recovering right now from a migraine (and had to miss a meeting at an agency that I’m trying to land a job!), I’m not able to write/expound on other illnesses that affect workplace functioning.
But I will when I’m up to it. I’ve suffered both the migraines, as well as severe depressions and anxiety. I have accomodations at work (e.g. flex time, part-time work) and have also consulted (grants writing). My husband and I have not been able to take the kinds of vacations we’d like that would in fact be therapeutic (e.g. Florida in winter) due to income–I keep saying if I can get a full-time job we’d be able to do this… Anyway, I look forward to adding my thoughts to the blog on this topic.
AND HERE’S ANOTHER ONE:
Hi Rosalind, Wow! A friend sent me the link to the New York Times article about your book, and suddenly I don’t feel like I’m the only person in the world trying to work and managing a chronic illness at the same time. I simply felt compelled to write to you.
I am 35, and at 17 I was diagnosed with myasthenia gravis, a relative of muscular dystrophy. The good news is, it is controlled by medication, primarily by prednisone and cyclosporine (no, I didn’t have a transplant, pharmacy assistant, but I’m glad you know enough about the drug to ask). The other good news is, I don’t LOOK sick, so it’s easy to hide from my employers until a flare-up “outs” me. The other good news is, flare-ups have outed me only a couple of times in my career–one of those was a couple of weeks ago, when my neurologist ordered me to bed for a week.
I keep it controlled pretty well as long as I don’t tire myself unnecessarily and don’t get a secondary infection…which is what happened a couple of weeks ago.
Here’s my problem: I’m single.
You guessed it. I can’t get health insurance without a job or a husband. Well, I’ve had a husband. He thought I was a hypochondriac (as mentioned, I don’t LOOK sick) and/or lazy. Most of the time I am able to work a full week and still have a life, as long as I take my meds and occasionally have a sleeping marathon. But I feel So. Much. Better when my employer allows me to work from home a day or two a week. Simply removing the time and effort required for the commute makes all the difference in the world. Unfortunately, I work for a small company, and they’re not particularly flexible in their rules or especially forward-thinking.
I love what I do. I am a professional resume writer. I can do that from any location in the world; all I need is a computer, a telephone, and an Internet connection. If I could, I would live the life of one of our company contractors. Work at home, adjust my workload according to how I feel and how much money I need, and go from there.
The problem with that: health insurance.
Are there any solutions to this problem? I fall into the category of doom, pre-existing conditions. Because of my unscheduled week off within the past month, I think I’ve also been identified as a liability in terms of the amount I cost the company for health insurance. I use it a lot, so I make the group costs go up. I also know that I am the most tenured and the best writer in the department, so if I get fired, that’s why, and you better believe lawyers will be involved. But I’d much prefer to keep my job, my health, and my life. I won’t even go into the amount I have to pay out-of-pocket for health care and insurance every month…let’s just say it’s fortunate I don’t have a car payment. I’m just lucky I HAVE health insurance.
Is there anything I can do so I could even think about working for myself? I would love to take some time and write a book, while sustaining myself by doing resumes on a contract basis, but while I work full-time, I don’t have the energy to even think about writing a book. I have to work full-time. Maybe someday I’ll get married again, but I’m not marrying for health insurance!
Anyway, Rosalind, you’ve probably heard all this before. I know I am much more fortunate than many, but sometimes I get a bit down-trodden when I look at my other single girlfriends who can take their health insurance for granted, or for the married ones who have more options, whether they are healthy or not.
There’s something wrong with this picture, folks. Is it difficult for you to get health insurance so you stay a job you don’t want or even stay married? Are you not taking vacations because CI has made your salary so low you can’t afford it? What are you doing about this?
Rosalind
Congrats on the NY Times coverage! Good for you, Girlfriend.
Thanks, Amy. I don’t do this work to be a “do-gooder” — I do it to earn a living — but I do feel lucky to earn a living doing something that can help others. It’s very rewarding to see this information get this attention!
Rosalind