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.

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