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

[Merida]

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.

@Abby Are you still out there? I read your story and wondered if you know about sacral dysfunction and instability? Onset after birth of 4th child is a big clue. Do you want to talk more about this? A sacral/ neck injury is what started everything for me. From a chiropractor - went in for a sore hip after yoga class. I know of some things that help.

 

[Merida]

I read over everyone's comments. This is all very sad and very incredible. Interesting how we are so conscientious in our work and life plan. Also, creative and determined, kind, thoughtful, helpful. We push ourselves to the nth degree to get things done correctly. We really are a little different in many important ways. Hmmmm.

 

[IrisRV]

I was an engineer. I'm going by what my engineer ex makes now. It makes me sick to think of what I could have earned over the 11+ years I've been ill. I try not to think about it.

Interesting to see how many high-powered, hard-working people with lots of potential got taken down by these illnesses. The myth that we are all just lazy and want to live off the dole would look ludicrous to anyone in the face of this information.

 

[ShyestofFlies]

I was unable to work during college because it was a very taxing environment (average four hours of sleep a night). After college, I worked for only three-four months of my life (part time) during a remission period in all my diseases/syndromes that happened to come at once. However the work compromised my health and I had to return to making no money and staying at home while applying for jobs more feasible for me to do. Which was nothing until the connective tissue flare was under control. I then switched gears and tried to start my own business, which failed and I lost all the money my mom loned me. If I were healthier I strongly believe I could earn the money back and perhaps make a small profit but not enough to live on. Now that I am having a horrible flare of what may be Mecfs I am bedridden except bathroom breaks and microwave meals and the occassional shower that I can't stand during. Working, volunteering, they seem impossible. Despite this I applied for a part time college program hoping that I will recover enough to handle a couple classes a semester and maybe one day will be able to work a part time job in this field. I believe I made approximately 100$ this past year. I've lost several years income from my combined chronic illnesses and nearly one years income from this possible cfsme outbreak. My professors told me I would get a starting salary around 35-50k usd... I graduated college 3 years ago and was well enough to work full time approximately 4 months of those 3 years.

 

[Mary Hamilton]

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.

Katie,
I feel like I lost myself too! I was a Medical Assistant and worked many hours a week. After I couldn't work anymore I took photography classes, one at a time. I sold some of my work out of a Christian gift shop and sometimes worked the register there one day a week. Three years ago I couldn't even do that. My passion just seemed to go away. I'm trying to get myself started again but I can't get out for weeks at a time. I need to figure something else out. Maybe still life's, I was thinking this morning.

 

[GG]

Why just for the last year? I was demoted at work years ago, that cost me at least $100 a week in salary (maybe 200), so that would be 5K a year if not more, was taken off of getting interviewed at work, never mind Promotions

This went on for years and years, working on disability now, and think that is going have a pretty big impact on how much I get for disability. This is something else I need to explore once my money starts coming in, never mind the other crap that happened to me at work!

GG

 

[GG]

~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.

Oh, sounds like you are looking for a yearly estimate, not the last year of your working?

GG

 

[carol a perry]

It seems like the type A's were hit the worst. I traded bonds, metals and currencies but ran a private wealth management practice when this hit me. Having positive autoimmune markers kept me seeing a rheumatologist who did his best but he finally had to refer me to a CFS Doc. I am lucky to be near one. The year I sold my biz was my best year ever 600,000.00 I miss the money sure but I really miss the people, the challenges and oh, my brain. CFS robbed me of pretty much everything. That includes my family who refer to me as "retired."

 

[SueS]

I'm able to earn some pennies working from home doing transcription, which is really taxing on my body sitting at a computer. I can't do more than six hours a week without it affecting me, and yet I'm so grateful that I'm able to do even that! On a good day I'm daydreaming about creative ideas I'd like to be able to put into action if I was better. Those days make me realise how very limited I am but that I'm less limited than many. Feeling that bubbling up of ideas and enthusiasm is frustrating because if I was able to be in that space more often I'd be able to write more of the fiction and nonfiction that I love. Trying to write here and there, and do it when ill and severely unconfident, is taxing. Especially in an industry that's so competitive anyway.

I was a late bloomer I guess. By the time I got ill in my late 20s I was studying writing at uni in an arts degree and was working administratively to pay the bills. I think in hindsight I'd been having physical issues for some time that were limiting even before I got glandular fever. I've always been circling around creative endeavours without having the confidence to step in fully so I can't say how much money I'd have earned if I wasn't sick. Maybe I'd still be broke. Just not as broke as now. Bleck.

 

[Mary Hamilton]

I'm able to earn some pennies working from home doing transcription, which is really taxing on my body sitting at a computer. I can't do more than six hours a week without it affecting me, and yet I'm so grateful that I'm able to do even that! On a good day I'm daydreaming about creative ideas I'd like to be able to put into action if I was better. Those days make me realise how very limited I am but that I'm less limited than many. Feeling that bubbling up of ideas and enthusiasm is frustrating because if I was able to be in that space more often I'd be able to write more of the fiction and nonfiction that I love. Trying to write here and there, and do it when ill and severely unconfident, is taxing. Especially in an industry that's so competitive anyway.

I was a late bloomer I guess. By the time I got ill in my late 20s I was studying writing at uni in an arts degree and was working administratively to pay the bills. I think in hindsight I'd been having physical issues for some time that were limiting even before I got glandular fever. I've always been circling around creative endeavours without having the confidence to step in fully so I can't say how much money I'd have earned if I wasn't sick. Maybe I'd still be broke. Just not as broke as now. Bleck.

Sue,
It sounds like we were both late bloomers. When I couldn't work anymore I started doing photography. I love it except the last three years I haven't done much because I can hardly ever get out of the house. I'm thinking this week about trying more inside still life photos. Would you like to follow each other? Mary

 

[SueS]

Certainly, Ms Hamilton. I cannot surround myself with enough late-blooming creative ME people

I quite like the idea of still lifes. There could be something in that. You know - your limitations leading you to an area that might be fruitful. Especially with the world of the well rushing so fast there's a lot they miss.

 

[GG]

~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.

Thought I posted on this thread, but don't see it So we are figuring over a lifetime and not a year?

GG

 

[Cort]

Oh, sounds like you are looking for a yearly estimate, not the last year of your working?

GG

I was thinking the last year in order to make it a little easier..

 

[Rachel Riggs]

I only checked 50-100k -- but as I was last working as a business development consultant at the rate of $125 per hour -- it would equal 260k if I could work full time! Of course, as a consultant, it's not likely that I would ever work that consistently...

 

[zenmom]

<sigh> I just changed my vote up to $50,000 - $99,000, because after reading some of the other posts I realized that if I had continued in my field, I would of course worked my way up into more skilled and higher paying jobs. Reading all these accounts of lives drained of energy and purpose makes me sad. It's my own story, over and over. I am hopeful that the current improved research scene will start to yield some answers, but after having CFS/ME for decades, I'm not sure it will come fast enough to benefit me personally. But I continue to hope, and hang in there.

 

[Seven]

Make a poll on what do we spend by year on pills+supplements + accommodations then the number will be scary.

 

[San Diego]

This went on for years and years, working on disability now, and think that is going have a pretty big impact on how much I get for disability. This is something else I need to explore once my money starts coming in, never mind the other crap that happened to me at work!

This is such a great point! As I dwindled from full steam ahead to totally disabled over the course of several years, my income gradually tapered off until it was zero. And yes, it absolutely did negatively effect how much I get in disability.

 

[Not dead yet!]

I think one of the hardest things is when you have a spouse who makes a lot of money, so you don't qualify for any aid. That's my situation. Not only can I not work, but I'm denied even the aid most people would get. It's a double minus. I look at things like the resources here and see "low income" and think... yeah that won't work. I can make ends meet, sure, but it's a catch-22, and with being ill, my food bills are higher because I want to eat high quality food.

I think it would help to have some benefits out there for people who are unemployed, regardless of their joint income level, high or low, doesn't matter. It could be a food stamp for things like organic chicken or grass fed beef (not corn finished), or game meat, or organic produce, or vitamins ONLY. I think more people would heal faster, and it would be a benefit to those industries.

Maybe we need a "sick status" instead of "disability" which is much harder. The assumption being that you will get well.

 

[Abrin]

I haven't been able to work for years now so I just chose whatever would be around what making minimum wage full-time was.

Whenever people tell me how lucky I am to be able to stay at home all the time I tell them right back how lucky they are to be able to have the health to be able to work the job they have that they hate.

I would trade being sick and stuck in bed all the time for working a soul-sucking job in a second. It never ceases to amaze me that the average person can understand how soul-sucking a job can be but they never can wrap their mind around how soul-sucking a chronic illness can be. You wouldn't think it would be such a logical stretch but I guess it is.

 

[cujet]

I'm 56 and still working in aviation. But I can't continue for long like this as I can't do much physical work. Plus I'd never be employable at any replacement full time job. Maybe I can get relief from Prednisone and work a few more years. If not, then I'm retiring soon.