By writing our book we did not mean to suggest that women who could not work when very ill do so, nor cause more shame. We wrote this, as Rosalind said, to provide inspiration to women, and to offer some ideas and suggestions about how it could be done. I think through sharing our stories, and that of others, we were pretty clear that it’s a treacherous, winding road.

I want only to say one other thing in response your comment about child support, and having that in our pockets after divorce. It’s another assumption of “luxury” that doesn’t take into account dad’s who don’t always pay, or child support agreements that were established before illness, and, in my case, alimony that discontinued 3 years before I first became ill. I’m only grateful that I’d gotten fully hooked into the family support system – which took about 2 years – before I became ill so it took only a call to notify family support when I could provide information to act on my behalf when needed.

I can see by your last reply to Rosalind’s comment that you understand we are very much like you. We are. I don’t know how any of us can deal effectively with the financial damage this can cause, except to invest and save funds long before anything hits us. Some people are good at that, and many are not. Most of us fly by the seat of our pants.

Joan

I am continually looking for financial solutions to share with those similarly situated and am indeed working on my own book-length memoir of this journey — including the financial angle.

But – I’m curious why you’re so bothered about what this DOESNT do? This book wasn’t meant to be a manual In fact, I’ve just produced a Working With Chronic Illnesss Workbook system http://www.cicoach.com/workbookpromo.html that has specifics including: job interviewing, vocational and functional assessments, networking workplace factors, disclosure and talking about illness. This book was meant to be inspirational. Both of us have full time, demanding businesses (as well as children and our illnesses) and wrote this out of the passion to get our message out there.

Clearly Women,Work and Autoimmune Disease is not for everyone – nothing is. But many men have read it — as well as people without AD — and have told me that it was very insightful for them.

You make assumptiions that are striking – about a “man’s life” – and that most single mothers have benefits. We focused on women because they’re more likely to stop working with chronic illness (according to stats), because they get AD 4 times as often as men and because they face barriers in the workplace that haven’t disappeared. NOt because they don’t carry a huge burden or are less capable than men.

Again, if you’re so intent on what this book doesn’t cover, go write that book.

Rosalind

Gayle

Your book is full of general advice — and that’s fine, but as a former financial professional, who made her living writing about personal financial planning, I find it too vague to be of use to myself, or the many financially troubled, chronically ill women I know.

Obviously, if you’re sick, you don’t dwell on your symptoms and it’s not a conversation opener. But you really underestimate how difficult it is to get accommodations in the work place. As far as starting your own business — people with chronic illnesses tend to have medical premiums and expenses that outpace what they could earn in a startup.

I’ve had CFS for nearly 20 years, did various career re-orgs, downscales, etc. Changed my work to accommodate my health. I was fired from a Wall Street job for being ill, used my severance to re-qualify and downscale, freelanced (which put me in a bind, unable to afford good health insurance to treat my illness) sought a job with my steadiest and sanest client, on all the “best of” employer lists.

I began to get sick immediately from full-time work, though I’d been able to manage my illness at home. My employer made reasonable accommodations in making my job more writing and less management, but so much of my marketing job had to do with sitting in meetings, talking informally to other people in the company, capturing the zeitgeist. It couldn’t be done by showing up for work two days a week, which is what my health needed. And my one day of telecommuting irked the dozens of working mothers in my department who longed for a similar arrangement. My company grew hostile. This is the reality.

I know dozens and dozens of women who are truly destitute now because they kept working while ill as you advise, because they quit or were forced out of a steady job that would have offered them disability insurance, but thought they could “wing it” by going into their own business with marginal and unpredictable health and little or no financial safety net.

Some sick people will need to accept that they will have to do disability — do volunteer work to stay in the world, practice your art if you have one. Be a housewife, take care of your kids and the elderly with the two or three good hours you have each day. You need to stop projecting the shame on those of us for whom a medical pension might be the most sane thing to do — either temporarily or long term — much as we hate it. It would be better if you offered some passive income advice — making sound stock market investments, buying income producing properties. But again, this presupposes a certain amount of pre-existing wealth, and chronically ill people are often drained financially by under-earning and over-spending on medical bills for years before they realize they must make a major life/career change.

I know a lot of women with illnesses are whiners, manipulate their husbands and family into taking care of them — I KNOW. But the stoic mode only works so much. I read Paula Kamen’s book. Please note, she has always had her parents as a safety net.

Also — why is your book directed at women only? I’ve always lived a man’s life — and have a man’s responsibilities. Chronic illness challenges are the same for both sexes these days.

Also, if you were a single mother, you were most likely partly benefitting from child support (and possibly alimony) so your situation isn’t quite what I’d call “independent.”

You wrote: ” you didn’t answer the question. ”
I’m not sure what question you’re referring to.

“.. ignore the financial realities of most working women. You write assuming that all women have the choice you seem to — to work or not to work. Most ill women have no choice but to bring in income. ”

I do think that many women think they have a choice – either because they can get financial support with a disability income or because of some other kind of financial support. I don’t dispute that many work to bring in income – and work when they’re not well — and it’s very very tough. But this book was written for a particular audience because that’s what I know (as does Joan) – working women with chronic illness -with a particular intention – to give them support to continue to do that as long as they can because in my experience, there is a lot of pressure not to work – regardless of income.

This book isn’t for everyone and doesn’t pretend nor try to cover everything that needs to be said about working while living with a chronic illness. I encourage anyone interested to pick up the banner and keep running – and write your own book on this subject. We can use it!
Rosalind

Obviously, someone with a college degree, plus an advanced degree, with experience in many fields, as I do, is privelaged in having more choices, can try career changes. Less educated and trained women with extremely pressing needs will have a narrower range — the issue of whether or not they see their income-producing efforts as a career or not is irrelevant.