Poll How Much in Lost Wages Did Fibromyalgia and/or Chronic Fatigue Syndrome Cost You This Past Year?

[Grace2U]

Reading these comments made me feel so sad because I can feel your pain and frustration. I was diagnosed 20 years ago. I left corporate about 15 years because of the constant criticism when I had to take time off - even though I was a top performer. I suppose I did what we all do: you work extra hard when you have good days to make up for the bad days, which then bring on a flare, etc. I had cancer, which knocked me down another notch, but I got up and continued. I then started my own business, and did well, but eventually I had to tone that down as well and as of 5 years ago I closed that down and now do consulting work when I can. I would say I earn a 5th of what I would have earned if I was able to continue on the career path I chose. If I then add the cost of medication and other treatments, I am probably on a negative. Add to that the loss of purpose, and having to redefine who I am and the feeling of being a burden, and it all becomes very expensive.
I try my best to be positive and to add value to society in any way I can, but there are days when I really miss the excitement and sense of achievement I had in my career.
Just thought: everyone that commented seem to have been very invested in their careers, could that be a common thread in Fibro sufferers? perhaps we all overdid it?

I think you've come up with another poll for Cort, AnneMarie.... I was always an exceptionally "high-achiever" and excelled in numerous areas in addition to my teaching career. I say that only because I've read somewhere that those challenged with CFS &/ or Fibro, had very successful, high paced lives prior to the illness. I am truly concerned my daughter (go, go, go....high-achiever) will become totally depleted at some point in her highly successful, very engaged life. Thank you for bringing "loss of purpose" into the conversation.....we can't put a monetary loss on it AnneMarie.

 

[Cort]

I was a successful real estate associate, working with my husband in La Jolla, CA. We complimented each other, he did all the contracts, and showings, and I got the clients and did showings, too. After the birth of my 4th child, fibro came on like gang busters. He's 33 now, and contributes to our household as does my daughter. Without energy, disabled with i.b.s., and chronic pain, migraines, insomnia, I simply gave up and took to my bed.

Successful real estate couple in La Jolla -- I could think of worse things.
Did the fourth pregnancy kick it off - or just make it worse?

 

[Cort]

This year I will be back on my career track.
I can not estimate my loss as I volunteered for many jobs and never bothered to know how much I might have made as consultant / mediator. They loved it and I am in tough with the my industry and kept on learning new skills and confident that I can do my job well.

If I have to estimate, and by considering what I might have built up in the past several years, it would be more than $250,000

Crot, I believe you should add one more - lost income completely.

Have fun,

Hari

Those would be some big numbers! We are going to be opening a new program soon that will attempt to do that - not individually but as a group...It'll use statistics from studies to determine average lost income. It won't be accurate with vast differences in income from place to place - but it'll be interesting.

In the meantime a poll would be good.

 

[Cort]

Hi Cort, I was a single flight attendant working maximum amount of time until I started having symptoms. I gradually wore down and was unable to
continue working the long hours with little sleep and all the other challenges of a physical job in the public eye. Because I had to quit work earlier than
I was financially able to I lost over $1,000,000 in salary, pension and social security over my lifetime if I live to the age of 85. Just salary since I quit work I've lost $500,000. I'm taking care of my 93 yr old mother and she is supporting me but that won't last much longer. Taking care of her has been costly healthwise for me and probably not too pleasant for her. I don't know what will happen to me when she's gone. This illness has not only been a financial burden but I've lost most of my friends because they don't believe I'm sick. They think I'm depressed. Why would I have put myself in this financial position when I really enjoyed my job and it afforded me independence and a good life? They never think past the idea that CFS doesn't exist. It's a frustrating illness on top of all the physical and emotional issues it causes. My symptoms started in 1992 and ramped up in 1996 but I continued working until 2003. Since the time I stopped working I haven't had a life or any happy times. What happened to my happy life??? It's time for a cure,,,there are too many of us in the same boat!!!

$1 million dollars lifetime - think of the total hit to the economy - from these diseases...

Why would I have put myself in this financial position when I really enjoyed my job and it afforded me independence and a good life? They never think past the idea that CFS doesn't exist.

How simple we can be! That many people can't or won't even grapple with a question like that....If's more than a little deflating..

 

[Cort]

I think we all lose ourselves with ICI (invisible chronic illness) that is so debilitating.

I felt I had 'become' my illness. Not sure that I had a purpose in life, before quitting my job and applying for a Government Disability Pension (except to work from payday to payday to pay my rent and medical debts).

But now I do. Now I consider myself a Photographer (who just happens to have chronic and debilitating health conditions), not a 'sick' (excuse the poor description) person. I now have a new label. An identity.

I completely understand your phrase "I felt I had lost myself". It's something that many CFS/ME/FM sufferers find along with the other severe debilitating health conditions in the community. We are no longer a person/individual. We are lost in this nether world that has no real existence or function. We are skin and bones and organs, but no sense of self. We lose our identity (like a victim of identity theft).

We feel invisible. No one sees us, hears us or senses our presence.

If at all possible, I think at my age (61), the important thing was to find something I could be passionate about (that overrides my negative emotions about a life that wasn't worth living).

I see this in retrospect now. A life worth living is impossible to imagine (when you've become invisible), but like many who have recovered their CFS/ME/FM (and I haven't), I can now see the way clearly towards another existence.

I have a life now. It is a different life to that which I might have imagined 35 years ago (before pain & fatigue) and that is the important word in my case.

Different is not better or worse than before (I 'retired' in 2010), it is just Different.

Somehow, and this may be almost impossible for the house & bed bound, we have to find a new identity.

Lovely post Vicki - what else is there to do really - other than find a way forward with a different lifestyle, different priorities, different ways of fulfillment..

 

[Cort]

In 2004 it was $45k annually.....before I had to leave a very much loved career in teaching.

I guess you would probably have to add on pension benefits. The rest of us lost social security benefits and lost opportunities for investment. The idea that I could invest in anything (other than social security ) for my long term benefit is just laughable...I'm pretty careful in that area. If I'd had the opportunity I would have been investing in a 401K or something similar decades ago....I had nothing to invest...

 

[michele]

I know how much the people in my field are currently earning or getting in pensions, so my number is definitely accurate.

 

[Kini]

Thinking about it kind of makes me sick to my stomach. I'm fortunate to have a roof over my head. I was good at my job and would be making decent money had I continued in the field I was in. I had an interview once for the Gates Family assistant Chief of Staff job. Ugh. I was just starting my illness and not at my best. One of many major disappointments over the years. The good part was I got to be home for all of my kids sporting activities. It meant the world to them I was at most every game if I was up to it.

 

[Diana Maus]

I was three years into a great job as a graphic designer when I became ill (at 36 yrs old). I managed to stay in that position, with the help of the ADA, for another 15 years. There were tremendous ups and downs but I had 2 daughters and was a single parent when I became ill, plus the position provided our only chance at health insurance. I am very lucky I was able to hang in there as long as I did.

I got great support from my therapist and some support from my doctor but I always used every bit of sick time and vacation time I had being ill. I even had to take medical leave several times when I got too bad to hang in there. It's lucky I was working in city government. They abide by strong ADA rules. I left in September of 2005, exactly ten years ago this month when I became unable to stay awake through an entire work day. I literally took sleep breaks in my car, setting an egg timer for my 15 minute break. I constantly felt like laying my head on my desk and giving in to sleep. It became impossible to sit in a chair at our meetings. I was too fatigued to sit up, hold my body up that long, plus my work was at a computer for long hours, causing tremendous body pain.

These things, coupled with the drama of the office, caused me to give in on my doctors advice. He said quit or die, literally. I miss my income, I miss what my retirement income would have been. It's still makes me crazy and sad to think of what Life would have been like if I had not come down with CFS and fibromyalgia. I planned my career and was succeeding. I'm sad my plans didn't pan out. I lost a fortune.

 

[Diana Maus]

I was making just over 64k when I left so I lost ten+ years of good income and the job was pretty secure, because it was government work and because of the accolades I had earned. I left before my retirement fully matured too, losing two thirds of what my monthly pension would have been. My career was all government so I had no social security, only public employees pension fund. Our City government didn't pay into SS so there was no disability available. I will never starve on my current pension but if I had to feed myself and pay for somewhere to live, I don't think I could make it on my pension alone. I certainly couldn't pay for health insurance. Good thing I am still married. It's odd that we don't talk about money and CFS/fibro more, since ongoing money stress only aggravates the illness. Try finding good medical care with limited resources.

 

[Diana Maus]

Even after leaving a high stress management job at a large institution in the 90s due to " lupus - like syndrome" , I founded my own thriving multi million dollar corporation. Even ill with m.e. /cfs since the 90s, I ran the business until the mid 2000s. I suspect my dysfunctional nervous system was stuck in fight or flight.

This was the reason I was considered " a highly functioning" cfids patient. Until it burned out in the mid 2000s. I face planted.

Am still face down. No second wind ever came about. Only cancer came about. Cancer found by "accident" no thanks to the many doctors I pleaded to for answers. No thanks to being " within normal limits" on paper as a lab value. Cancer on top of the even more exacerbated and disabling M.E., cfids, seid, undiagnosed hashimotos, hhv6.

As with all of us, it would have been more fiscally responsible of the medical community to keep me healthy and working. I enhanced the quality of life for my clients. Now I just exist in the 4 walls of my bedroom.

I can relate to being stuck in flight or flight response. I did feel like I was fighting for my life and was on high alert all the time. I think that's why I collapsed at the end.

 

[Grace2U]

This year I will be back on my career track.
I can not estimate my loss as I volunteered for many jobs and never bothered to know how much I might have made as consultant / mediator. They loved it and I am in tough with the my industry and kept on learning new skills and confident that I can do my job well.

If I have to estimate, and by considering what I might have built up in the past several years, it would be more than $250,000

Crot, I believe you should add one more - lost income completely.

Have fun,

Hari

I am so very happy for you Hari To be back on a career track is most wonderful! That conveys much encouragement Thank you for sharing!

 

[Grace2U]

I was making just over 64k when I left so I lost ten+ years of good income and the job was pretty secure, because it was government work and because of the accolades I had earned. I left before my retirement fully matured too, losing two thirds of what my monthly pension would have been. My career was all government so I had no social security, only public employees pension fund. Our City government didn't pay into SS so there was no disability available. I will never starve on my current pension but if I had to feed myself and pay for somewhere to live, I don't think I could make it on my pension alone. I certainly couldn't pay for health insurance. Good thing I am still married. It's odd that we don't talk about money and CFS/fibro more, since ongoing money stress only aggravates the illness. Try finding good medical care with limited resources.

So true Diana Maus..... I too am very fortunate to be married. Although I also lost 2/3s of my teaching retirement, I do have medical insurance through my husband's employer. I didn't know as a gov employee you are not eligible for disability benefits....nor did I know disability benefits were dependent upon the City for which you work paying into the system. I feel badly for you Diana Maus....sounds like you had a very rewarding career

 

[Cort]

I was three years into a great job as a graphic designer when I became ill (at 36 yrs old). I managed to stay in that position, with the help of the ADA, for another 15 years. There were tremendous ups and downs but I had 2 daughters and was a single parent when I became ill, plus the position provided our only chance at health insurance. I am very lucky I was able to hang in there as long as I did.

I got great support from my therapist and some support from my doctor but I always used every bit of sick time and vacation time I had being ill. I even had to take medical leave several times when I got too bad to hang in there. It's lucky I was working in city government. They abide by strong ADA rules. I left in September of 2005, exactly ten years ago this month when I became unable to stay awake through an entire work day. I literally took sleep breaks in my car, setting an egg timer for my 15 minute break. I constantly felt like laying my head on my desk and giving in to sleep. It became impossible to sit in a chair at our meetings. I was too fatigued to sit up, hold my body up that long, plus my work was at a computer for long hours, causing tremendous body pain.

These things, coupled with the drama of the office, caused me to give in on my doctors advice. He said quit or die, literally. I miss my income, I miss what my retirement income would have been. It's still makes me crazy and sad to think of what Life would have been like if I had not come down with CFS and fibromyalgia. I planned my career and was succeeding. I'm sad my plans didn't pan out. I lost a fortune.

Darn..I think that's harder to handle than for me...because the end was in sight for you...

I hardly got to first base - I hardly know what I'm missed.

Glad you were able to hang in there for so long, though - although it was clearly not pleasant.

 

[Diana Maus]

So true Diana Maus..... I too am very fortunate to be married. Although I also lost 2/3s of my teaching retirement, I do have medical insurance through my husband's employer. I didn't know as a gov employee you are not eligible for disability benefits....nor did I know disability benefits were dependent upon the City for which you work paying into the system. I feel badly for you Diana Maus....sounds like you had a very rewarding career

Ironically, the same city that handled ADA issues well had a very poor record of handling their own disability claims. We were not enrolled in California Disability so they had to provide their own. At the time I would have applied, a coworker had just been denied disability for severe fibromyalgia. They sent her to their own doctor for exam, a doctor that was a pulmonologist/psychiatrist. You can guess how that went. She was denied when the doctor said her troubles were caused by her sister moving out of state! I believed at the time that to go through the process with this idiot doctor and expect him to be fair would have been too stressful. The city had a reputation for denying whenever possible. The stress there was unbearable already because of attitudes towards my health and attendance records, the privileges accorded me due to illness created strife and envy believe it or not. People don't shine when they are trapped in offices. They can become so petty.

Sometimes I do wish I had run that gauntlet. Now, looking back, I should have hired a lawyer to handle it for me. The cost would have been returned many times over. Maybe by telling my story I can help someone else think about doing that if they are up against a wall.

 

[carol a perry]

My last year working was 2008. I owed a wealth management firm that grossed over 500K per year and would have provided an excellent retirement if not for CFS/ME and Fibro. Luckily I had my own disability policy but costs for treatment ( some that help and many that don't) continue to rise while my income does not. The double whammy of lost productivity along with rising health care costs will eventually overcome stagnant income and then what? I see nothing on the horizon to change this trajectory. My balance sheet looks a lot like the nation's, bouncing on a cliff with a long way down. Even though I am luckier than many, going from highly functional with a stable financial future to worrying about how I will afford a 267% increase in the cost of Ampligen is depressing.
The financial pain is almost as bad as the physical pain and that level is pretty high but the loss of identity and what means is almost worse.

 

[GratefulWarrior]

I think you've come up with another poll for Cort, AnneMarie.... I was always an exceptionally "high-achiever" and excelled in numerous areas in addition to my teaching career. I say that only because I've read somewhere that those challenged with CFS &/ or Fibro, had very successful, high paced lives prior to the illness. I am truly concerned my daughter (go, go, go....high-achiever) will become totally depleted at some point in her highly successful, very engaged life. Thank you for bringing "loss of purpose" into the conversation.....we can't put a monetary loss on it AnneMarie.

The point you bring up is a good one to be revisited.
A poll. Perhaps one day a research study.


A study defining and comparing successful, high achieving individuals with and without this disease would be interesting.

A study to see what, if any, personality traits +/- environmental factors +/- congenital factors, etc etc of high achieving individuals determine who will most likely be afflicted with this severe life altering disease.

We all know many high achieving individuals who do not and did not ever suffer from this illness.

So what makes this illness target a certain subset?

 

[Terrie J Williams]

When it was strongly suggested that i retire at age 53, I was making $120k+ a 3-15% bonus per year depending upon our business unit's profitability but my lost productivity was around 45%. I was working out of my bed most days, limited in my ability to travel for business, work the expected 15 to 20% overtime and thus be competitive for future raises and promotions. It was suggested that I would be high on the list for the next round of layoffs. Without this illness, i likely would have been able to work at least another 10 years with an estimated 3 to 10% raise per year. When I left, i got 5 years of medical and dental benefits. That was 8 years ago. My income is 1/4 of what it was and I am responsible for 3 other dependents. My medical benefits under the Healthcare act cost 600 per month with a 6000 deductible. Under this plan, my meds were 500 a momth until my deductible is paid. It's cheaper to pay out of pocket for my monthly pain management dr, $150 plus meds approx 300/mo using dtug assistance programs. I just pray that i don't have to be hospitalized. I am on my 4th appeal to disability, even though I am in bed 4 out 7 days a week. Whats wrong with this picture? Oh yes, before getting ill, I was considered a top performer in an IT management job, thus my salary. I was there for 30 years. Had been seriously ill for the last 5 years.

 

[GratefulWarrior]

When it was strongly suggested that i retire at age 53, I was making $120k+ a 3-15% bonus per year depending upon our business unit's profitability but my lost productivity was around 45%. I was working out of my bed most days, limited in my ability to travel for business, work the expected 15 to 20% overtime and thus be competitive for future raises and promotions. It was suggested that I would be high on the list for the next round of layoffs. Without this illness, i likely would have been able to work at least another 10 years with an estimated 3 to 10% raise per year. When I left, i got 5 years of medical and dental benefits. That was 8 years ago. My income is 1/4 of what it was and I am responsible for 3 other dependents. My medical benefits under the Healthcare act cost 600 per month with a 6000 deductible. Under this plan, my meds were 500 a momth until my deductible is paid. It's cheaper to pay out of pocket for my monthly pain management dr, $150 plus meds approx 300/mo using dtug assistance programs. I just pray that i don't have to be hospitalized. I am on my 4th appeal to disability, even though I am in bed 4 out 7 days a week. Whats wrong with this picture? Oh yes, before getting ill, I was considered a top performer in an IT management job, thus my salary. I was there for 30 years. Had been seriously ill for the last 5 years.

Your situation and suffering is so unjust in every way Terrie J Williams. I truly wish the the medical community, the pharmaceutical and insurance companies, the government, the energy in the un8verse etc etc would unite to battle for your well being. To right the wrongs. For all of us.

 

[Terrie J Williams]

Your situation and suffering is so unjust in every way Terrie J Williams. I truly wish the the medical community, the pharmaceutical and insurance companies, the government, the energy in the un8verse etc etc would unite to battle for your well being. To right the wrongs. For all of us.

Thank you. I appreciate your empathy. I am grateful for what income I do have. It's just not easy to make it stretch but I do recognize that some have it much worse with no income at all. Gentle Hugs to all!