Reality Chick

 

People with chronic health issues are often also chronically financially challenged. It’s no secret that a catastrophic health event is the number one reason for bankruptcy in the U.S. It’s not just the bills, it’s the lack of earnings.

          Many people with CI’s (that’s shorthand for chronic illnesses) can’t work as much as they’d like to, or at all. If they fall down the rabbit hole of the disability system, they find themselves in an underground maze of dead-end tunnels when they try to get back to work — if, and how much they can earn without losing their health coverage and/or disability income.

The system right now makes it very hard to get off disability once you’re on it, or to even try to work while  trying to get your health back. The Social Security Administration has a Ticket to Work Program designed to deal with this, and  which President Obama’s said he plans to expand. But the stance of  private insurance companies — which offer much more comprehensive coverage — towards people disabled by chronic illnesses, especially invisible, cyclical, and variable ones, is a terribly adversarial one.

             The problem with most of the general financial advice out there, from Suze Orman to Money magazine, is that it assumes a certain amount of existing wealth and savings, and a normal working life span. For people with CI’s, it’s often just not the case. We can’t bump up our retirement savings by maxing out our 401k if we don’t have one. We can’t contribute to an IRA if we’re trying to stay in our apartment and out of the homeless shelter. We can’t pay for $600 a month in uncovered medical expenses by cutting out that daily double latte – because we could never afford it in the first place.

I’d like to create a clearing house of information, remove the smoke and mirrors that make it so hard for us to move forward financially. For the Normal ones, I need to show why their chronically ill friends and family members, unless they are married to a very high earner or have a trust fund, are barred from taking part of the working world.

 I worked healthy for 15 years, sick for nine, and had to stop full-time work ten years ago. I soon found out that I knew more about working with a chronic illness, and managing financially, than any of the career coaches, books and services out there. I was a business writer with a specialty in personal financial planning. I was and remain shocked and dismayed at the bad advice well-referred therapists, life coaches and career coaches handed out to me. It was often financially dangerous, sometimes unethical and possibly illegal. Above all, it was useless.

 A  few years ago Lisa Belkin wrote a piece in the New York Times showcasing the difficulties of working with chronic illness.

http://query.nytimes.com/gst/fullpage.html?res=9807E5DA1630F934A25751C1A9639C8B63

 The concept of being disabled before one has accumulated substantial savings isn’t even on their radar screen.  No investment advisor has a plan for someone with an empty bank account.

  Reality Check Needed:

The women (and men) I’ve met in the chronic illness community – in my doctor’s drip room, online, people who’ve called me responding to pieces I’ve written – worked until the bitter end, worked until they were taken away on stretchers, often fired without disability pay simply for being ill, as I was when first stricken in 1991. When we strike up conversations hooked up to our IV’s, the first thing we talk about is – Do you still work? When did you stop working? How did it go? Many have a lawsuit pending, because their employer refused to accommodate their illness: they were essentially fired for being sick. After publishing an article, I got a phone call from a once-middle class woman, now homeless due to Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). She’d been socially and financially frozen out by most of her family. One brother was sympathetic, but his church-going wife opposed either letting her ill and homeless sister-in-law move in, or his supporting her in any way financially. He did manage to transfer the many Marriott points he’d earned through his extensive business travel to her, so she was intermittently able to stay in comfort, when she wasn’t scrambling for a bed in a shelter.

The Marriage Penalty

Chronic illness kills 80% of marriages in which they occur, so most women do not even have the option of being dependent on anyone.  When I travelled to Washington to ask Congress for more CFIDS research funds, my lobbying partner was a divorced woman holding an M.A. from the University of Chicago, who’d held high government offices and once ran her own business, who had been reduced, for a time, to living in her car. She now has a clean and safe trailer. Brain damage caused a speech delay, as with a stroke victim, and at 50 she walked laboriously with a cane.

Family Matters

Another woman, a former Boston lawyer, who left her job thinking she could freelance, got too sick to work at all, and having left of her own choice, was ineligible for disability pay. Eventually she moved back to her native New York to help take care of her aged mother, and stayed on in her apartment. “I wish I could set up a video camera so I could show how verbally abusive he is to me.” She stays because she cannot afford to live anywhere on her own, or to even share with a roommate. Many of her experimental medicines are uncovered by insurance, and she is so weak she can’t use public transport, and so takes cabs across town to see our doctor.

Another woman I know, a once well-earning professional with a Master’s degree, would like to move home with her mother in suburban New Jersey, but is unwelcome. If she doesn’t get the wrongful dismissal settlement she hopes for from her former employer, she will be forced to move to a group home for the mentally ill. She isn’t mentally ill, but like many people with Chronic Fatigue and Immune Dysfunction Syndrome, was written out for depression by the Social Security Administration. This is a common ploy, because it is easier to kick people with depression off the system.

This is the reality of chronic illness. The more I talk to people, the more I realize how fortunate I was, to have been well enough to establish a career before I got sick at age 30. To have realized early on that the variables of a chronic illness don’t mix well with the variables of running my own business, when I didn’t have a family or husband able to serve as banker and safety net. To have picked to work for a company which at least gave lip service to whole life needs. To have been lucky enough, at least at first, to have a boss who understood and tried to accommodate. To have disclosed the day I was hired. To have a company that didn’t give me too much trouble when I finally had to be taken out (more or less on a stretcher) – and who still contributes a small sum to a pension, pays for not only my, but my husband’s medical insurance – which was a Godsend, when he went several years without a steady job during the post- 9/11 recession. My disability package secured and paid for our mortgage and expenses for at least three years. Yesterday my husband got his historical Social Security Statement. His income for 2002? $5,000. From close to $100,000 in 1999. Through all this, my income was invaluable.

The Disability Trap

When I first got sick, it wasn’t hard to find lawyers and articles and books and lawyers to help me prove my disability and collect it.  But no one offered a strategy for getting off disability, and ever since I went on disability, I’ve wanted to get off. But considering my health, my whole life circumstances, my hellish experience working sick for a decade, both freelance and on-staff, and the punitive “work and lose” system currently in place, I don’t have a lot of choices.

This week, I face typical issues. What do we pay for? The $250 brakes my husband needs on his car for his 170 mile a day commute? The $300 bald tires that must be replaced because I already got a warning from a cop? The $1,000 I need to travel to New York where I’m trying to sell my novel – which I hope will get back in the earning world? The usual $1,000 I spend each month in uncovered health costs – my supplements, my $100+ trip to Dr. L in New York for my energy-restoring drip, the Goji juice that actually seems to give me energy, but costs $42 a bottle? My gluten-free food and the expense of eating healthfully and organically? The new miracle energy supplement so many people are raving about, but which costs $85 a month? And where do I find money for wedding and graduation presents?

The Poverty Cycle

Cort Johnson, web host and editor of Phoenix Rising newsletter and CEO of the nonprofit PhoenixRising.org, camped in the dezert as a young man, so as to be independent and not impose on his family, making pocket money from fast food jobs. He thought he was doing the right thing, ingesting a mega-dose of protein and fish oils, surviving mainly on cheap canned sardines. He also got an overdose of mercury. I meet many, many people in the drip room who can’t afford to eat well enough to improve their health. They have gone into debt with experimental drugs uncovered by insurance, with modalities like acupuncture, to say nothing of the Snake Oil cures they sample out of desperation.

The Insecurity of Social Security

I hope I’ve made it clear by now that there’s a lot more to the issue than the willingness to work.  It’s true that you can make $710 above Social Security disability, but if your check is only for $500 a month – as it may be if you got sick in college and never established a work history – that’s not close to an independent life. I know many people who tried to do the right thing by trying to work their way off Social Security, but due to employer demands and bookkeeping glitches, sometimes earned slightly more than $710, at which time they  were immediately and completely dropped from the system, without health coverage or income, and had to pay lawyers to get it reinstated. One woman wound up evicted.

Entrepreneurial Dreams

It’s a wonderful idea to work from home. But I warn anyone starting a business to have a safety net – three years living expenses, because that’s how long it takes for a typical business to turn a profit.  Second to having a health crisis, starting your own business is the easiest way to go bankrupt in this country. You need capitalization — money – to start with, and that’s something chronically ill people are generally already depleted of, due to under- or non-earning, plus greater medical expenses than average. If you have a spouse or family willing to be your banker, you’re in a different situation, but such people, I’ve found, are rare.

In one day, in Dr. L’s drip room, I met an attractive young woman, blond and thin, who said she was in town with her fiancé, a medical resident. She worked as much as she could, for her mother, who had a health food business. This young woman was well-situated for her very part-time career – but she’s a rare bird indeed in the chronic illness world. Another young woman I met the same day had returned to New York to live with her mother when she got too ill to work in Seattle. Her mother disbelieved that her CFIDS was a real illness, and threw her out. She was now “on the street” – living in homeless shelters, and turning tricks.

Tainted Income

One of the hardest things for people with chronic illnesses is conveying to their friends and families the financial spot we’re in. Our experience is often one of shame – one woman I know is berated by her father for being on “welfare” – and disbelief, rather than compassion.  God bless all with families that can be supportive emotionally and financially.

Unfortunately, say the word disability pay, and many people scoff. Here in Rhode Island, a former fire chief makes $150,000 in retroactive disability pay on top of his state pension. The system is frequently abused, mostly by public and union employees. Those of us of marginal means and real illnesses are tainted with that brush.

I would like to bring to public light the tactics insurance companies use to scare us into submission. These are issues that should be open to discussion and negotiation. We want to work. Employers and insurance companies don’t want to pay us for not working. The missing player here is an employer who’s willing to accommodate us.  

I’m in search of companies and employment agencies willing to risk hiring the chronically ill. I’ve heard of agencies that specializes in flex- and part-time work, geared towards parents. Will they, and companies apply that same flexibility to those with variable chronic illnesses?

From ADA to the DL

 Many companies talk a good game about working with people with disabilities. There are also a number of books out there, like Gayle Backstrom’s I’d Rather be Working: a Step-by-Step Guide to Financial Self-Support for People with Chronic Illness that ought to be consulted (but actually offered no answers for my own particular health/life dilemma) and Job Hunting for the So-Called Handicapped by Richard Nelson Bolles – who gave us What Color is Your Parachute? – and Dale Susan Brown.  The idea behind these books is laudable, but as one who worked ill for a decade and has been trying to get back into the working world for another, hard to put into practice for someone with multiple and unpredictable physical and cognitive malfunctions – a fact noted in the latter book. 

 The Americans with Disabilities Act was designed to encourage  employers to accommodate people with static, or predictable disabilities – paralysis or sensory disabilities.  A new amendment to the law was designed to encourage employers to accommodate people with the kind of multiple, cyclical and unpredictable disabilities typical of autoimmune disorders.

 The details of the law can be viewed here: http://www.eeoc.gov/ada/amendments_notice.html

 If my own company had  been able to accommodate my illness, I never would have had to join their dole qeue. All they would have had to do was let me do what I’d done for them the previous eighteen months of freelancing, before being hired on staff: work part time in the office, and part time at home. Ironically, to get the health benefits I needed to keep my health optimum, I had to do something – show up at their set times – which was really not necessary for the performance of my writing job – but which ultimately caused my health to cave in.

The Disability Dilemma

            I’m looking to make this a visible cause, so I and other people don’t have to hear the snide comments we all hear every day of our lives about the fact that we don’t work for pay. And I want to do something even more challenging – I want to change private insurance laws, like the one that says that if I make any money at all, my income, medical coverage, pension and benefits will go away. Forever.  

A few years ago, I applied for a part-time university teaching job and was offered it. I wasn’t sure if I could handle the load of teaching two classes, especially as they were held early in the morning. No matter if I go to bed at seven p.m., I always feel horrible in the mornings due to adrenal malfunction.  But I was desperate to work, to be in the world. The problem was, this teaching, which I wanted to just try for a semester, only paid about a quarter of my disability pay, and came with no benefits or promise of job security. And it would end my company’s disability income forever.

After consulting with my lawyer ($400 an hour) I found I couldn’t do it. He’d had the exact situation with another person from my company who’d gone off on disability with Multiple Sclerosis. She was punished for just trying to see if she could work. He even told me that if I pulled the same trick, he might not even want to take my case, it was too much trouble, the big guns at my company were determined to get as many people off the roles as they could.

I asked the university department head if she would let me work without pay – perhaps my salary could be funneled into some sort of escrow account, available later if I can get off disability? I just wanted to work. No – things had to be done by the book.

Financial Snake Oil

Career coaches working with people trying to get off disability have recommended I actually give a false Social Security number – my husband’s — in order to collect money. They are not thinking things through – just getting seduced by their own Financial Snake Oil cure. But the above example shows how impossible it is to get an ethical, solid organization to do something even slightly questionable.

I wish it didn’t have to be so punitive. The nature of my and many other chronic illnesses is that they’re cyclical. I used to feel pretty well for months – even years at a time. Before I went back to full time work in 1995, I would have described myself as cured. I went on a bike trip in Nantucket the weekend before I started that job, and rode 30 miles a day. The house of cards came tumbling down a few weeks after I started work full time.

This is the kind of story that Suze Orman doesn’t cover, because she has no answers. This is the kind of story for which I want to find a happy ending. ~~~

Advance Excerpt from: Breathing Under Water, Living With and Lying About Chronic Fatigue Syndrome. Copyright 2009, Christina Gombar.

 

 

 

 

 

 

 

 

 

Above Right: Revelers on the Deck of the Ocean Mist in Matunuck, Rhode Island.

When I moved to Rhode Island six years ago, my old college roommate  introduced me to her friends: “This is Tina, don’t mind her, she’s Teatotal.” Because I limited myself to one glass of champagne, and only ever drank with food. But here, pregnant women openly drink. Scotch. In the morning. I know many high functioning, middle-aged, career-successful people who put in a couple of hours at their regular bar nightly, and return for Saturday and Sunday lunch to drink the afternoon away.
 
Because I’m not a heavy drinker, it’s made it harder than usual to segue from an urban-work culture of New York, where people are addicted to jobs, gourmet food and psychotherapy, to the resort area where booze serves all three functions: nutrition, occupation, and all-purpose soul-soother and stress-buster. A  steep recession reigns here in the Ocean State and Rhode Island has one of the highest unemployment rates in the country. But you’d never know this from looking at the three-deep crowd at the bars of the local restaurants. In a way it’s heartening to see middle-aged and elderly people enjoy themselves and socialize like teenagers.

 

Read more at the great new drinking site:  http://www.drinkingdiaries.com/

 

 

 

 

 

 

 

 

 

 

 

For the world to listen. The tide is finally turning against the unfettered fertility quest, with the sad public examples of Octo-Mom, and Jon and Kate’s marital nosedive. Finally, last month, in British Cosmo, Cameron Diaz said it: Maybe there’s just too much emphasis on having babies. Maybe if women weren’t under such constant pressure to reproduce — “shunned” was the word she used for the childless — it wouldn’t feel so terrible when it doesn’t happen.

In the British press the single, childless-for-now star has drawn more raves than rants:

The U.K.  Telegraph calls Cameron Diaz  ”the height of responsible citizenship” – for remaining childless. Hear hear!

http://www.telegraph.co.uk/news/newstopics/celebritynews/5524706/Cameron-Diaz-does-the-decent-thing.html

In this month’s Exhale, I praise the forthright star and give a rave review to Pamela Jeanne Tsigdinos’s new book, Silent Sorority: 

Summer Reading Roundup

 Some Fresh Food for Thought, plus some Old Chestnuts to bite into – try not to break any teeth!  

             In books, as well as in blogs, I often find our friends across the pond speak more realistically about fertility issues than we Americans, with our unfettered optimism. (Babies for everyone! IVF at 90!)

 Beyond Childlessness, Rachel Black, Louise Scull, Rodale Press, 2005

            I have read several books on unintended childlessness, none offered the depth of comfort and shared experience as this one. The authors are two women — one single, one married to a man who forbid a family without making his preferences clear before marriage — who sought out and interviewed other women in their situation, and let them tell their stories themselves.

            This book is head and shoulders above any other “fix the problem” or memoir anthologies on childlessness, because it ventures where others dare not go. Well-meaning books like the husband and wife-authored Sweet Grapes sugarcoat some of the ugly truths. 

 
            Other books on childlessness say “it’s no use going over whose fault it is.” Actually, there’s a lot of good in that. One of the authors, Rachel Black, has worked out with her husband that when she/they are faced with the ubiquitous and painful question, “Do you have children/why not?” She says “My husband didn’t want them.” Childless women are demonized and ostracized, and assumed to be selfish. It was his decision, let him take the responsibility socially. She also made him get a vasectomy, so he wouldn’t reproduce with someone else, should their marriage fall apart under this incredible strain, and move on to a younger woman.
                 This book also exposes what an arduous and punishing route adoption can be – especially in Britain. Adoptive parents must be rich, young and healthy — a hundred times more qualified than a natural parent. One interviewee commented on the British government’s stress on keeping adoptive children in touch with their biological families. “If they’re that keen to keep in touch, why are they not looking after the child themselves? This constant having to keep in touch, we couldn’t actually break free and be our own family, and have a proper, intimate family life, there were always going to be people looking over your shoulder, who you’re answerable to.” 

Silent No More            

If you haven’t ordered Exhaler Pamela Jeanne’s Tsigdinos’s Silent Sorority yet, here’s a teaser: 

“You should never, never ask a woman when/if she’s going to have kids. If she’s already been trying for a while, it will feel like a knife to the heart. It forces her to either tell you more than she wanted to or to lie. Because if she had wanted to talk about having kids in the first place, she would have.”

 “Telling a woman who has lost a baby that ‘it wasn’t meant to be’ is not compassionate. It’s merely a way of easing your own discomfort by dismissing ours. Minimizing our pain, be it offering ‘solutions’ or explanations only serves to make yourself feel better while inflicting further hurt on us … It’s hard to contemplate the randomness of the cruel universe, where bad things happen to good people, and it may make it easier for them to sleep if they can convince themselves that there is a reason for it, and we must’ve deserved it. Telling us you know what we’re going through because it took you X months to get pregnant minimizes our feelings. You had a happy ending. We may not.”

 “I’ve been stripped down and made new on this journey. I’ve become utterly vulnerable, and forced to see the world differently.  I’ll never have the kind of optimism that some people have that anything is possible, that it will all work out in the end.”

 “I have had to take responsibility for my life in a deeper way than I ever had before. And because we live in a society where so few seem to take true responsibility for themselves and for those around them, it is very lonely. We don’t live in a world that really embraces soul-searching, and so much of this journey has been about soul-searching for me. I think a lot of the bad and unsolicited advice and glib responses to infertility (like “just adopt” or “it wasn’t meant to be”) are because people are so uncomfortable with pain and the possibility of pain with no resolution. We can’t take away the pain. All we can do is transform the response to it.”

 Adapted from Silent Sorority: A (Barren) Woman Gets Busy, Angry, Lost, and Found, Copyright 2009, Pamela Mahoney Tsigdinos.  www.silentsorority.com.

Pamela Jeanne’s memoir is the first honest empty-handed one-person take since:

Why Don’t You Have Kids? Living a Full Life Without Parenthood,

By Lesley Lafayette

This book, published in 1994, is a bit dated — not in the essential common sense and truth of its pronouncements, but in that the boldness of the author’s opinions. They would be entirely unacceptable in today’s family-at-all-costs universe.

            I found it extremely reflective of my own experience, though it won’t be to everyone’s:

“Looking back, I can see now that my desperate desire to have a baby came not from some internal biological drive, nor was it the result of thoughtful introspection and practical planning. It was my response to a hysterical society, a culture that stripped me of my intrinsic worth and told me point-blank that to fail to reproduce was to fail.”

“…there was no opposing view, no voice of reason, no organization or group to provide a dialogue.”

            On giving up the baby quest: “I stopped beating myself up. You’ve heard the old joke about hitting yourself on the head with a hammer because it feels so good when you stop? It does.”

            Writes the author, “I know what it is to obsessively grieve and despair because I did not fit in to what society deemed as the norm, what my peers and the media and even my government saw as acceptable and ‘fulfilled.’ I know what it feels like to be alone, to be different, to be isolated, to be ignored.”

            She begs the mass media to: “Have some characters who don’t even want kids and enjoy a happy life nevertheless. Have someone opt for an abortion occasionally rather than turn wistful and blushing about her pregnancy as if she drank a cup of Instant Mommy, as if all the problems of the world will be solved when she has her baby.

            “The fact that more than a million abortions are performed each year in this country is a testament that not every pregnancy is a wanted one. Writers should be free to portray real life and not the sugar and spice that conservative advertisers force upon them … tell the truth.”

            She describes taking part in a T.V. talk show on women and childbearing where she was the only dissenting voice in a panel of “talking uteruses” – including a woman who, with grown children in their 30s, had an egg-donor baby at 52.

            “Each and every one of them … had one goal and one goal only in her life: to produce an infant as quickly as possible, spending whatever money she had and all of the time it might take – even going into debt and emotional quicksand if necessary.”

            Lafayette’s opinions would be unacceptable in today’s media environment. The trajectory of the book leads towards a directive to embrace a “Child Free” identity – to form groups and make friendships with others similarly situated. It’s a great idea, but my concern is that this further segregates the Child Free/Childless from mainstream society, when what is needed is mutual respect, interaction and consideration. 

            The Child Free Network she began but seems to have distanced herself from has a spotty web site that seems to have drifted from the author’s original worthy aims, degenerating into snarky commentary about “breeders.” There are articles complaining about other people’s “noisy, stinky” kids.  This is certainly disappointing. Still, the original book is an honest, interesting read to balance today’s fertility-centric media message.

 

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