Pain in the Pocket: Fibromyalgia Is Expensive

Pain in the Pocket: Fibromyalgia Is Expensive

People commonly talk about the physical costs of having fibromyalgia. Seldom is the monetary cost discussed. The other day, I began to calculate how much better off I’d be financially if I hadn’t had this illness. I was staggered by the answer.

During a period of time in my 40s that I categorize as a “remission,” I was able to finish my college education. Because my employer paid tuition benefits, I was able to attend classes at night. (I can’t even remember having enough energy to do such a thing!) I had completed my bachelor’s degree and was nearing the end of an MBA program when my husband suddenly died of a heart attack. Overwhelming grief prevented me from continuing my studies, which is a major regret all these years later.

The bright spot was that the education I did receive qualified me for various job openings within the company, eventually elevating me from my original administrative assistant position to that of a financial analyst. Over time, the stress of this very responsible position, along with the worsening of my symptoms — it’s difficult to say which came first — resulted in me filing for disability.

I’d paid into the private disability plan offered by my employer, in addition to qualifying for Social Security disability, so I had no financial worries. All that changed two years later, when the private insurance company declared that fibromyalgia was a psychological rather than physical illness. As such, benefits were payable for only two years. The two years were over. In a flash, my security was gone.

Of course, I hired an attorney to fight my case, and then a second one to handle the litigation. Eventually, I won; however, winning isn’t always profitable. My share of the settlement (after attorney’s fees and taxes) ended up being approximately 35 percent of what my disability payments would have been.

As much as I needed the income then, there was no question of my returning to work. The stress of that two-year legal battle nearly did me in. All my symptoms had worsened, and I was lucky to get through the day, much less hold a job. Social Security disability would be my only source of income until age 65, when I’d begin collecting my pension.

Here’s where the second major cost of fibromyalgia became apparent. Both pensions and Social Security retirement benefits are calculated using a formula based upon income plus years of work. Had I been able to work until retirement age, I would have qualified for a very generous pension. In addition, I would have earned a much larger Social Security payment. However, because I was able to work for only 18 years, I qualified for very little. Because my employer’s pension plan includes no cost-of-living increases, my meager payment will remain the same until the day I die.

In addition to income limitations are the costs of cancellations. Due to the unpredictable nature of this illness, I make every effort to purchase only items that can be returned and to make only appointments that can be canceled. Unfortunately, some expenses are unavoidable.

For example, I was recently charged for a dental appointment that just happened to be scheduled on what was a very bad day for me. Some days, I just can’t take any more discomfort than I already have. Other days, my irritable bowel has me tied to the bathroom. There’s just no way to know ahead of time when those days will be.

There have also been theater seats, airline tickets, and educational classes of all kinds. I felt perfectly capable of attending these events at the time I registered or bought the ticket, but by the time they occurred, new symptoms had erupted or old symptoms had worsened. It happens often. “Cancellation” is practically my middle name.

Living without commitments in today’s world is a huge challenge. Without reservations, many activities are totally undoable. I continually fight the temptation to make promises on the days when I feel capable. In addition to the cost, I feel plenty sorry for myself when the day comes and I can’t attend.

But then I remind myself of the people who have no good days at all. The gratitude I feel is much more powerful than my temporary disappointment. As painful, inconvenient, and costly as my illness is, on my occasional good days, I can lead a near-normal life. Other folks are not so fortunate.


Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.


  1. Marsha A. Rodriguez says:

    Your article made my day! Wow do I appreciate that you shared the same nightmare I had to fight with my Long Term (Short Term) disability provider.
    I made the mistake of choosing not to go to college & straight to work at the age of 17. My career turned out great due to being a baby boomer, when without a college degree you good still get promotions. Of course I never reached the level you attained, still I loved my job’s. I was a credit manager for several companies most of my working life until I was offered the Human Resources manager position at my last employer. I loved the job, it was long hours, bringing work home going in on the weekends so I catch up with no interruptions. It was never a 40 hr per week job most jobs aren’t in our business world. Then my life started to crash with fibromyalgia. It took a long time to get the diagnosis & crazy as it sounds I was relieved to have an answer until the unknown nightmare began. I live in the Central Valley of California & there was almost zero information on fibromyalgia. I spent tons of money on so called Fibro experts, bogus supplements etc.
    The harder I tried to keep up with my job the further I sank. My PCP put me on a limited 20 hours per week for my job. I knew that was not feasible & then I got an emailed from one of my bosses which was devastating. It was suggested that I take advantage of the LTD policy provided by my employer due to a serious mistake I made that was very costly. The person who was responsible lied to save his job.
    I know it is proper business to not maintain contact with former employees especially when a disability is i involved my problem was I took it personally.
    The LTD company fought me from day one, they didn’t want to pay period. So like you even through I submitted results from three Dr’s that I was permanently disabled it didn’t matter. So instead of getting 2/3 of my salary until age 66 I got 2 years based on exclusions they had for every single symptom. I couldn’t afford an attorney, tried to get one on a contingency basis. The financial blow was horrible plus I had to pay for health insurance. The emotional trauma was the worst part. The bright event was that I was approved for SSDI my first try. According to others Fibro-ites this was unheard of for SSDI.
    I appealed my LTD when they cut me off after 2 years, the reply I received stated:
    “Our Doctor has determined that there is no medical reason why you can’t sit in a chair 40 hours a week.” At least I was able to laugh at the stupidity of the denial. What is the purpose in having LTD policy’s?
    Sorry this is so long
    Thank you

  2. Christine Lynch says:

    I just love this publication because of its ability to create a sense of sharing with its readers. It has given me the opportunity to hear from someone who shared the same battle that I did. I’m so sorry you had to go through the same nightmare. But I thank you so much for telling me. I feel so much less alone.

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