Working While Chronically Ill

By Marci Alboher
Rosalind JoffeRosalind Joffe

In researching my column on how small business owners deal with health insurance, I talked to Rosalind Joffe, an executive
coach who specializes in helping people who have chronic illnesses. Ms. Joffe has suffered from multiple sclerosis and ulcerative colitis, both of which have stabilized with treatment — the removal of her colon for the colitis, and the medication, Avonex, for her MS. Prior to getting sick, Ms. Joffe had two successful careers, first as a multimedia producer and then as a professor of communications at Boston University. She became a coach because she wanted a job that she could do from home and that would be flexible enough to allow her to modify her schedule whenever she had a bad day. She credits her ability to make that career change to the fact that her husband had a good health insurance policy that could cover her as well — yet another example of health insurance affecting a career choice.

According to Ms. Joffe, and to research conducted by the National Organization on Disability, only 32 percent of Americans with disabilities (ages 18 to 64) are working, but two thirds of those unemployed would rather be working. Ms. Joffe says she encourages people with chronic illnesses to figure out how they can work rather than go on disability. Research, she says, shows that remaining employed can actually lead to better health, not to mention improving self-esteem and maintaining social contacts.

You can learn more about Ms. Joffe’s work at cicoach.com, which provides resources for people with chronic illnesses and KeepWorkingGirlfriend.com a blog that promotes a forthcoming book for women suffering from autoimmune diseases, written by Ms. Joffe and Joan Friedlander. Both the site and the blog have extensive information and links to all kinds of resources, books, blogs and support organizations.

Ms Joffe is at her best when she poses questions to think about, as in this post about how to know if self-employment is a good fit for you. If you’re hungry for more than what is on her sites, Ms. Joffe, like a smart entrepreneur, offers a lot of extra information in newsletters and pdf workbooks and in the book, “Women, Work, And Autoimmune Disease,” available for preordering on Amazon.com.

Comments are no longer being accepted.

Adria April 22, 2008 · 8:04 pm

I have lupus, a kidney transplant and recently underwent chemotherapy for lymphoma due to the transplant meds. I am 31 years old. I have w orked the whole time (including while on dialysis for 5 years) in addition to continuing (pretty much on time) to pursue my PhD in public health. Both my education and my job position allow me to do this. Many of the women with lupus with whom I speak are not academics or mid- to -upper -level management, but hold civil service or secretarial jobs. There is little flexibility in these (and manual labor) jobs for bouts with illness. So I hope Ms. Joffe’s book is not aimed at the over-educated, rather than at the 68% of chronically ill who may not have the same opportunity to keep working, girlfriend.

Fred L. Wimberly April 22, 2008 · 10:20 pm

Having been disabled with a back injury at age 49 I can appreciate the value of working. Through the assistance of the Vocational Rehabilitation agency in Florida, I was able to find a good job. I started a new and personally rewarding career and was able to work until my recent retirement. Most of the people that I know that had some sort of disability want to work. God bless all those that assist the disabled to find gainful employment. Thus making their lives more fulfiling. Most that are disabled are able to do something productive in many industries. They just need that break, as I received.

Fred L. Wimberly

barry morrison April 22, 2008 · 11:28 pm

I read your article w/intrest. I have a seriously bad back.I have a serious case of neuropathy,and I simply can’t stand very long on my feet. Plus it seems to be getting more serious all the time…the drugs I take don’t seem to take all the pain away,but they help.My doctor keeps filling out the scrips,and my part D insurance takes care of my drug needs but I’m worried about it being bad for my longtime health.(I take a combination of nuerontin and methodon)I never thought I would miss working(intel cable work)but the contractors you have to work for insist on you wearing double work pouches. I could feel it wearing my lower back and it finally took me out.

Homero Velazquez April 23, 2008 · 6:14 am

I am special interested on the subject,because I am a Diabetic type I (more exactly X-Syndrome)person and also I have allergies(also a Chronical disease)

Live and employment are not simple under these circunstances

(my opinion)

Homero Velazquez

Health Industry Veteran April 23, 2008 · 9:21 am

Being the spouse of someone who works full time despite having had serious chronic disease for over 40 yaers, I fully agree that self-employment is one of the few viable options open to those with chronic illnesses. My wife is able to manage around the requirements of her medical condition without the pressure of mandatory 9 to 5 face time that so many employers demand.

The downside is the cost and availability of benefits. Were she not on my health benefit plan or dependent life insurance, she would not be able to obtain these on her own despite her continuing to work full time. Were she looking for a job, her medical condition would be a “silent” barrier despite employment and hiring discrimination laws.

This is a major obstacle which may require government intervention to address if we hope to fully capitalize on those who are willing and able to work despite their medical limitations. Not everyone is suited to self employment, nor should they be driven to it by the lack of viable options for employment because of their health.

Diane Leach April 23, 2008 · 11:20 am

I have Ehlers Danlos syndrome and chronic gastrointestinal illness. I am at work now, feeling terrible despite all my medications. I am forty, and need to work. Why? Without my excellent health care plan, courtesy of my job, I will die.

I would happily pay higher taxes for national health insurance. I am not unwilling to work, but my current situation–needing to work full time– is not sustainable. I am certain others are suffering even more than I am, and cannot imagine how they manage.

Keith April 23, 2008 · 12:09 pm

Personally, I believe that one of the most important aspects of working while disabled is the sense of identity that holding a job can provide. Too often, I have seen people with disabilities center their entire lives – indeed, their entire identities – around their conditions. Work provides a sense of autonomy that can serve to overcome the learned helplessness that is so frequently associated with having a chronic illness.

The individuals who most often proclaim that they “cannot” work seem to be those who have centered their entire lives around their illness and often have co-existing psychiatric issues. They receive tremendous secondary gain from being sick. And they are also the loudest voices amongst the chronically ill.

lisa mordin April 23, 2008 · 1:34 pm

I have had severe allergic asthma all my life and was home-schooled throughout most of high school and some college. I’ve recently developed intersitial cystitis, an irritating bladder condition coupled with nocturia, which has me getting up several times a night to go to the bathroom. I am 33 and have had about 12 surgeries since 1993, with 7 of them in the last 2.5 years. I’ve been working full-time. I’ve tried going to grad school, but something always gets in the way. I’ve grown too tired to do much other than work, go to the pharmacy, and manage my doctor appointments. I work for the governmet and can’t work from home; though I have reduced my hours from 40 to 30 which enables me to keep my health insurance. I’m always exhausted, running on auto-pilot.

But I really want to work with sick children in a hospital environment. There aren’t any jobs available for someone like me without a Masters so I always feel fairly stuck. Someone asks me what my goals are or where I see myself in five years and I think, I just want to stay out of the hospital.

ino April 23, 2008 · 3:28 pm

My mother was diagnosed with Hep C two years (she received it from a blood transfusion many years ago). She continued to work even through all of the medications and therapies and medical issues, and I have the utmost respect for her because of that. I cannot imagine how difficult that is.

fxp April 23, 2008 · 3:28 pm

Why aren’t the politicians addressing this serious issue of universal health care regardless of employment? It seems those that have health insurance are less inclined to help those that do not have it. A solution to this problem will go a long way to help those with chronic illness.

Sue April 23, 2008 · 4:28 pm

For Keith…. I think your comment is the height of insensivity and found it really annoying. People like you who keep telling me to “just do it and you will get used to it”, or that it is all in my head and to just get over it, make me want to slap them.

I have had fibromyalgia for 30 years, along with a genetic low muscle tone disorder, respiratory problems, asthma and diabetic neuropathy in my feet. Oh yeah, circulatory problems in my legs from having 6 large babies. I managed to raise my kids with lots of help from a great husband, I also tried multiple times to work part time but found I just couldn’t sustain it. I would work one day on pain meds and then spend the next day in severe pain in bed. I couldn’t take care of my home or family that way and I never ‘got used to it’. It just kept getting worse and worse until I couldn’t function at all.
When my husband died suddenly 6 years ago I didn’t know what I was going to do. I already knew that even part time work was out of the question as I now have to do all the things I did, plus the things he used to do and care for my elderly, handicapped mother. It took two years and a lawyer but I finally got disabled widow benefits and 6 mo. later I was able to get medicare. I only had 6 mo of COBRA coverage left and the life insurance money was running low.

It has saved my life and probably my sanity. I would have tried to work, and in the end failed with disasterous physical effects. On good days I can do a few hours of housework, or yardwork or shopping… never all of them. Afterwards I spend a few hours lying down on meds so I can get up the next day and do a little more.

I would give anything to feel like a normal person and not live with constant fatigue and pain. I have tried everything the doctors can think of and a lot of things suggested by friends and relatives. Life isn’t much fun at all and I rather look forward to getting to leave this miserable existance. My religion prevents me from doing anything drastic, but the thought of not hurting anymore and not feeling exhausted is really attractive.
So I do as much as I can to take care of myself, my home, my mom and my church callings. When I just can’t go anymore I give myself permission to just quit for a day or so until things get better, then I get up and go again until I can’t.

I really hope you are never in this condition. You really don’t want to find out how hard it is and what it is like to have to deal with sarcastic and unsympathetic people.

Andrea April 24, 2008 · 12:06 am

I’m with Sue – Keith, you didn’t mention having a disability yourself, did you? Even if you do, your lack of compassion is showing. I have had a disability my whole life – severe asthma, fibromyalgia, and now chronic pain, sleep apnea, major depression and an underactive thyroid and still managed to get a Masters degree and not get fat! I was a patient advocate on national government committees, hospital Boards and for a grassroots patient organization. I worked as a psychologist in private practice. I went through a 5-year stretch of complete unemployment due to inability to work because of illnesses and am just now getting back to 3/4-time work from home. I think I’m qualified to observe that the majority of people with disabilities are not motivated by secondary gain (although a very small subset can be); the vast majority are motivated by an intense need to prevent secondary losses – they want to keep working so they don’t lose their sense of identify, so they don’t succumb to feelings of helplessness. So when their emotional resources and spirit and medical complications and quality of life and enthusiasm get sucked out of them over years of pushing their bodies beyond their limits and they decide to trade in their identity and sense of control over their lives and livelihood for disability benefits, they need support – maybe even applause – for making one of the toughest decisions of their lives. And because so much of the world sees them the way you do, they get depressed over feeling kicked when they’ve already given up so much. Everyone’s threshold for how much quality of life they can give up before they break is an entirely personal decision to be respected by others. Thanks for sharing what I perceive as a rather simplistic opinion driven by a lack of empathy. Yours represents a prevalent social attitude that gives disabled people one more psychological reminder to reaffirm their inherent worth, to give themselves the respect they deserve and to love themselves just the way they are – working or not!

JL April 24, 2008 · 12:26 am

Keith,

Out of curiosity, how much experience had you had working with people who are disabled and/or have chronic conditions? I have been working in this field for more than a decade and it has been my experience that the vast majority of people on SSDI would love nothing more than to work and have a career. Apparently you have the pleasure of a reasonably healthy body and have never had to deal with a chronic condition. The “tremendous secondary gains” you mention can never compensate for the lack of income, low self esteem and hopelessness that can occur after developing a chronic condition. You sound somewhat like a person how is experiencing career burnout in the worker’s comp industry. Even when working with people who are receiving worker’s comp benefits, I find that most want nothing more than to regain their health enough to enable them to return to work. You still have a lot to learn! My sincerest wishes to you that you never develop a chronic, disabling condition.

Nancy McClung April 24, 2008 · 8:15 am

Attention Diane Leach:
My mother also suffered from Ehlers Danlos syndrome and GI complications. When I discovered at age 50 that I am a Celiac, it turns out so was my mother. I was cured from my ten year disability from arthritis when I went on the Gluten Free diet. My mother was terminal by the time I was diagnosed and could not be saved by the GF Diet.
From my Celiac research, I firmly believe that everyone needs to have a Celiac Panel for screening. 1/100 people are Celiacs and 1/9 people are Gluten Intolerant. One in ten Type I Diabetes are Celiacs. Celiac is an autoimmune disease and linked to MS, Fibromyalgia, Cancer, ADD, Asthma, Arthritis and a mind blowing list of other disabling chronic diseases. I recommend Dr. Peter Green’s book: CELIAC DISEASE-THE HIDDEN EPIDEMIC.
Nancy McClung

bill ray April 28, 2008 · 4:10 pm

I just turned 70 earlier this month, & am retiring May 3. I’m a civilian engineer with the USAF intelligence agency.
I was first diagnosed with COPD in 2000 & then CHFailure in Jan this year. Also have arthritic hands (no thumbs, to speak of), glaucoma, & arrested chronic alcoholism (23+ years, thank Gdo & AA).
I know for sure how important it is to stay plugged in to an active lifestyle, but today, an 8-hour workday takes all I have. So I will continue to be active in helping others as I have for many years & continue to receive the blessings that follow.

FL April 30, 2008 · 10:31 pm

Diane L, how can you pay higher taxes for national health care if you don’t work?

cam April 30, 2008 · 10:38 pm

Dear Keith,

Ever try holding down a job while contending with chronic vertigo?

Guess what, it doesn’t work.

Susan May 4, 2008 · 10:22 am

After 15 years of debilitating constant pain, vertigo and extreme fatigue, I discovered it was due to a severe adverse drug reaction to something I’d been prescribed for a wrongly diagnosed original virus following an insect bite. The doctor, with his impressive credentials, died before I could confront him. I have spent the past five years trying desperately to get my life back in order with a medical community that won’t acknowledge one of their own made a mistake (See January Annals of Internal Medicine) or that someone could have been so injured by prescription drug widely recognized as dangerous outside the US, but still protected by the FDA. My only hope is self-employment, for which I need the peace and time to relearn old skills because of serious, permanent neuro damage done to me by that drug and the original, ignored post-viral encephalitis. My only source of funds demands so much repeated detailed documentation that I have no strength left to recover enough to support myself. Slowly edging toward some self-sufficiency, I have relapsed badly from their constant demands and the ongoing distress of financial insecurity. Why would anyone think I would have put myself into this position purposely? I loved my life before the insect bite. Incredible how many people said when I was completely bedridden, “Gee, I wish I could lie down for awhile.” Illness scares other people. Is this why America ranks so badly in the WHO study with regard to care of the chronically ill? There’s an empathy gulf in the US with regard to chronic illness. Trade one’s personal freedom for a life of constant pain? It’s not an insensitive suggestion, it’s ignorance and prejudice of the worst sort.

Jane May 4, 2008 · 1:42 pm

I was diagnosed with Ulcerative Colitis in 2001 and I’m currently completing a 5-6 year doctoral program in clinical psychology (although my program doesn’t know about my illness due to fear of discrimination). I’m in a very demanding, competitive program and often work 60-70 hours per week. I am the only person in my program who suffers from a chronic illness from what I know so I feel isolated at times. I am on track to complete the program. I credit the gratification I get from helping patients and the rewarding aspects of my work with helping to stabalize my illness and symptoms to a certain degree. As we know, the mind and body are connected and feeling productive as well as doing something I enjoy provides me with a sense of self-efficacy. While I’m not suggesting that everyone with a chronic, debilitating illness work, I do believe that challenging onself and feeling engaged in the world is important for both physical and mental health. Even volunteering a few hours a week can provide a sense of acomplishment that may help elevate mood when someone is chronically ill and feeling hopeless.

Another way i cope with having a chronic illness while working in a demanding role is by making sure I take care of myself and acknowledge my limitations. I opt for “good enough” in my work and when I’m having serious fatigue and pain, I don’t push myself too much and i make sure I get into bed early (even if it means not putting in 100% at work or skipping a day). I also practice meditation for stress and pain relief, do yoga, joined an online support group for IBD, and make sure I see my friends one day per week. Before my chronic illness, I ate junk food, slept very little, and stressed out over the small stuff so I try to remind myself that good things have come out of this suffering. I also remind myself (although this is hard to live by) not to stress over things unless it is an emergency or crisis, such as death or life threatening illness.

r9chard voorhees May 4, 2008 · 3:40 pm

I know what eveyoone is talking about …live alone , family all dead , and 7 yrs ago hit by underissured motorist destroyed back and neck as well as life , lost business , and in debt to eyeballs trying keep home and mtg and borrowed to hilt waiting for settlement from my own auto insur which isnt budging ………nasty and stopped all health care …………my inurance blue cfross ran up to over 35k yr traditional plan so keep back surgeon, neuro, Drs at HSS in NTC .now on hmo since blue cross wiped me out financially .sucks is all I can say .now looking for job with many ailments came along since that time because of stress etc , including addisons .

cam May 4, 2008 · 7:16 pm

Susan,

You nailed it. I’m so sorry you have had (and are having) such a difficult time. It seems like in our culture the only true compassion comes from others who are experiencing some kind of similar illness. It’s a very sad commentary on our country. I’ve lost nearly all my friends and become estranged from siblings since I had to stop working (a great career that I absolutely loved) and go on disability. Another layer of loss and pain.

One of many hurtful moments I recall was when a neighbor, a working actress and voice coach, found out I was on Disability; Her comment:

“Wow! That’s great. I wish I could get on Disability”

I was stunned. No one would choose this. It doesn’t seem like it would be that hard for others to understand, at least enough to be kind. How do we educate those around us? I’ve given up, but there must be a way.

J.T. Christopher May 4, 2008 · 9:51 pm

You guys are so impressive…actually, it’s nice to be able to hear “from” about people who work in pain. I got to stop a few years ago, the work, not the pain; I’d rather be useful. Now I have cerebral atrophy as well as a certain discomfort from the soles of my feet peeling off thanks to uninsured meningitis, in 1993. Now about Keith….he has a…how would you like to live in his brain??? Disability. Only shows when he posts, maybe, but he can sure sit in the “disabled” section of trains & busses…….

SS May 5, 2008 · 5:13 am

To FL (# 16), regarding your question to Diane: people who don’t earn wages still pay taxes in many ways! Every time you shop, you pay sales tax, for e.g.
America really needs universal health care (regardless of work status or health situation) and I don’t know when the politicians are going to do something about this.

roberto May 5, 2008 · 1:58 pm

Even if the difficulties of working while physically disabled (I am a paraphlegic) I find important to do some work with pay at home (I write for magazines)in order to improve self esteem by just being useful. Sitting or lying around all day watchng tv or reading can be quite boring and makes one feel helpless. Perhaps the greatest problem is finding people with enough empathy as to dedicate a few minutes a day to chat or write. Ir really helps. I invite others in my condition ot write to me and exchange tips and experiences. (rpalmi@yahoo.com), as I can’t go out (too much fuss and pain) and very few old “friends” come by to visit nowadays.
Roberto, Caracas, Venezuela

sandra May 7, 2008 · 1:27 pm

what is the suggestion for those who become disabled and was already self-employed? that is my situation. and let me tell you that just because you are self-employed does not mean that you have all the “perks” and can do what you want. it is actually the opposite. i am a (or was) a 9 to 5iver to my clientele. actually i was at the mercy would be a better way to put it. now, i have lost all that clientele because of my illness (dysautonomia) and cannot rebuild it either. now what?
i have managed to look ahead and get my husband into a better field, so that i do not have to work, unless he absolutely needs me. but that does not make up for the money we lost per year.
that’s how i managed, but life is not that black and white, it is a little gray mixed in and unless you have a little green, it can go back to black quickly.