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

[Cort]

"The High (and Unmet) Cost of Fibromyalgia" blog indicated that the indirect costs of FM - due to lost productivity and wages, etc. - are much higher than the direct medical costs of the disease.

[fright]

[/fright]This poll asks how much in lost wages do you believe having FM or ME/CFS has cost you in the past year.

This is not an easy question to answer for those who have been ill for quite some time. I, for instance, came down with ME/CFS/FM over thirty years ago. I have to take a pretty wild guess. I project that if I'd followed my path then I'd probably working as a professional in a field and pulling in a good salary. My estimate of lost wages is very high! (It might not be high enough ...)

 

[zenmom]

Same with me, Cort. It's been so long, it's hard to estimate. At the very least, $25,000 to $49,999 per year. And that may be low, if my career prospered.

 

[Cort]

Same with me, Cort. It's been so long, it's hard to estimate. At the very least, $25,000 to $49,999 per year. And that may be low, if my career prospered.

~I put $50-100K.. I think that's about what two of my siblings are making - although that figure could be low (lol) - I'm so long out of the professional workforce that I really don't know..

see we have two 250K pluses! It would be interesting to hear their story.

 

[GratefulWarrior]

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.

 

[Cort]

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.

Just incredible Grateful Warrior

The falls these diseases impose can be mind-boggling

 

[Debbie Iverson]

I put $50,000 to $99,000, but it could have been much higher. I was five years into my own graphic design firm when I became ill, and through the first few years of my illness I was still able to earn a great deal more than that by burning the candle both ends and living with near constant pain.

Eventually I couldn't manage sales calls or project management or any of the multitasking involved in running my business or designing in general.

Within five years of becoming ill and constantly looking for an answer to the question of what was plaguing me, I was no longer earning a living, was spending many thousands of dollars in insurance deductibles each year, and blew through our savings account trying to make ends meet.

I estimate my wages lost so far at around $750,000 on the conservative side. Not really sure the full economic impact after factoring in selling our home below value to find something "affordable" on one small salary or the cost of years of dr visits and lab work.

What I do know is that it took TEN years of pushing my body to do things it clearly couldn't before getting a diagnosis THIS year. I imagine with a timely diagnosis I may have managed to salvage some portion of my 25-year career and not become a burden to my husband and twelve-year-old girl.

And that was one seriously long rant!! I'm very sorry, and thanks for listening!

 

[Cort]

I put $50,000 to $99,000, but it could have been much higher. I was five years into my own graphic design firm when I became ill, and through the first few years of my illness I was still able to earn a great deal more than that by burning the candle both ends and living with near constant pain.

Eventually I couldn't manage sales calls or project management or any of the multitasking involved in running my business or designing in general.

Within five years of becoming ill and constantly looking for an answer to the question of what was plaguing me, I was no longer earning a living, was spending many thousands of dollars in insurance deductibles each year, and blew through our savings account trying to make ends meet.

I estimate my wages lost so far at around $750,000 on the conservative side. Not really sure the full economic impact after factoring in selling our home below value to find something "affordable" on one small salary or the cost of years of dr visits and lab work.

What I do know is that it took TEN years of pushing my body to do things it clearly couldn't before getting a diagnosis THIS year. I imagine with a timely diagnosis I may have managed to salvage some portion of my 25-year career and not become a burden to my husband and twelve-year-old girl.

And that was one seriously long rant!! I'm very sorry, and thanks for listening!

A story like that deserves at least a couple of rants

Ten years to get a diagnosis

 

[Abby]

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.

 

[Debbie Iverson]

A story like that deserves at least a couple of rants

Ten years to get a diagnosis

Thanks Cort!
I guess the bright side is that they found absolutely EVERYTHING else that was wrong with me over the years and that's all worked out. LOL!

 

[Danielle Lehon]

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!!!

 

[Vicki]

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.

So sorry to hear you are among the large group of patients housebound. I can only imagine how soul-destroying it must be to be confined to a room (or housebound), since I have mostly been able to get outdoors for a walk/shopping/outings at least. The days/weeks I have been confined indoors, I have mentally gone down-hill rapidly (even after spinal surgery).

I continue to feel blessed to be able to take care of myself and follow my somewhat limited, but altogether passionate, love of (my) Photography.

 

[Katie]

I was an Assistant Director of Care at a hospital and was being primed to take over the Director's position when she retired. I guess I retired (forced to stop working) before her and she was approaching 70!
If I really thought before I answered this poll I would also add in the extras like Danielle did. There were yearly bonuses and pay increases. My next step up would have been a large increase financially also. So, I'm not absolutely sure on amounts lost over the last 15 years plus the next 6 years to come before I would have retired. What about pension funds, health care benefits lost etc etc.
Thanks Cort! I see it all in black and white now! Actually this is a really good poll, it sure brings to light loss of careers, loss of goals, loss of life as we used to know it.
I think my biggest loss, though, is purpose. It's taken me a very very long time to re-figure that out. For the last 15 years I felt I lost myself and my purpose in life.

 

[Seeksassy]

I am very lucky that my lo g term disability plan from work pays me 70% of my income and pension contributions and health benefits continue. However, the opportunity for promotion or to change emoyers was lost about 12 years ago. I used to be angry about that +the first few years) as I realized the lost opportunities, but eventually came to a place of gratitude for being able to remain in the workplace as long as I did, and for the disability income and benefits that I know so many of us don't have.

 

[Vicki]

I think my biggest loss, though, is purpose. It's taken me a very very long time to re-figure that out. For the last 15 years I felt I lost myself and my purpose in life.

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.

 

[Hari]

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

 

[VLynx]

As an anesthesiologist, I could expect to make at least $400,00 per year if I worked full time. I work very sporadically. I've been fortunate to have that and to have a job that pays a very high hourly wage, so we can get by on working a few weeks a year. For how much longer I can do this, I don't know, because I'm going downhill and can't control my hours when I work (can be up to a 12 hour day). But if you want to talk lost wages, I'm out at least $250,000 a year for 10 years.

 

[Erika Edmondstone]

Directly - fewer work hours, so around $25,000 there. Plus medical tests, supplements, appointments, etc - which is everything that isn't dedicated to the mortgage and household expenses. My husband and I used to go 50:50 in bills - now he's carrying a higher proportion, which has been very hard for me to come to terms with. So there are indirect costs in higher interest (because our mortgage repayments have reduced).
I've also had to reduce my superannuation contributions, so that has an impact on my retirement pension as well.

 

[Annemarie]

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?

 

[Grace2U]

"The High (and Unmet) Cost of Fibromyalgia" blog indicated that the indirect costs of FM - due to lost productivity and wages, etc. - are much higher than the direct medical costs of the disease.

[fright]View attachment 615 [/fright]This poll asks how much in lost wages do you believe having FM or ME/CFS has cost you in the past year.

This is not an easy question to answer for those who have been ill for quite some time. I, for instance, came down with ME/CFS/FM over thirty years ago. I have to take a pretty wild guess. I project that if I'd followed my path then I'd probably working as a professional in a field and pulling in a good salary. My estimate of lost wages is very high! (It might not be high enough ...)

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

 

[Grace2U]

I was an Assistant Director of Care at a hospital and was being primed to take over the Director's position when she retired. I guess I retired (forced to stop working) before her and she was approaching 70!
If I really thought before I answered this poll I would also add in the extras like Danielle did. There were yearly bonuses and pay increases. My next step up would have been a large increase financially also. So, I'm not absolutely sure on amounts lost over the last 15 years plus the next 6 years to come before I would have retired. What about pension funds, health care benefits lost etc etc.
Thanks Cort! I see it all in black and white now! Actually this is a really good poll, it sure brings to light loss of careers, loss of goals, loss of life as we used to know it.
I think my biggest loss, though, is purpose. It's taken me a very very long time to re-figure that out. For the last 15 years I felt I lost myself and my purpose in life.

I was going to say the same Katie......I had a very difficult time finding PURPOSE again (don't think I've fully succeeded) Thank you for bringing that concept into your response. That, in itself, is a subject for a poll.