I have worked full-time with CFIDS for the last 17 years. When I got sick, I was 31 years old and my wife was pregnant with our first and what would turn out to be our only child. The first few years of work after developing CFIDS were unmitigated torture. My company had just gone through a merger and this created enough internal chaos for me to stay under the radar during the period in which I became extremely ill (viral-like illness in September 1998 followed by 50 pounds of weight loss, unrelenting nausea for about 2 years, swollen spleen, culminating in what is laughably labelled as "fatigue"...as if not having the energy to inhale without exhaustion is the same as feeling tired. Walking a city block felt like walking neck-deep through an Olympic-sized swimming pool of thick molasses.)
Now, I am 48 and I continue to work as our family expenses climb, as my daughter has had some significant health problems develop in the last 5 years. My wife does not work, she has recurring depression and really doesn't care one way or the other about much in life, including me, how the rent gets paid, how her twice weekly therapy bills get paid, etc. I am the donkey pulling the cart.
After the first three years of illness, I became a patient of Paul Cheney. His bicycle ergometry tests at the time showed I had a worse case of CFIDS than the average patient in his practice, and almost all of his other patients at the time were fully disabled. He has been surprised that I have managed to keep working this whole time, although he has recommended that I have a disability assessment a number of times. In any case, Cheney's protocol really helped my condition to stabilize, so that by 2005 I was having less trouble continuing to work. The constant suffering and anxiety about severe relapses, the emergence of new symptoms, and the severity of the usual symptoms of severe fatigue, pain, insomnia, and cognitive problems lessened a bit. I compensated for poor memory and flares of brain fog by using my "healthier" periods to develop complex models that I designed to essentially update automatically. (I am an economist/statistician by training.) During bad days/weeks, I could then use these models to "skate" because of the built-in automation of the models. It also helps that nobody I work with has skills that are similar to mine. In fact, most of them are not analytical in the slightest, which makes me look good in comparison.
But work has taken all of my energy and left almost nothing else. I do not have any friends -- most fell by the wayside after I first became sick and I don't have any energy to maintain friendships now. My marriage is in tatters -- my wife and I basically avoid each other and I resent that she refuses to work, to share the burden of supporting ourselves and our daughter. We have avoided a divorce because we believe it would be too traumatic for my daughter. One of my brothers is sympathetic about my illness. My parents don't want to know about my health or my struggles, and an older brother is fully convinced that CFIDS is psychosomatic. When I see him, he loves to tell me about his P90X workout routine, his long-distance running regimen, his ski trips. (He is my financial adviser. If I had a spine, I would fire him.)
Work has become progressively more difficult in recent years. I have found that memory problems have become far more severe and my thought processes have slowed as I have aged with this disease. I have to make "to do" lists for myself at work. If I do not keep this list in front of me, I cannot remember what I have already done, what I have to do next, how to prioritize, etc. In meetings, I often have what seems to be a coherent, cogent thought, but when I start to speak I forget mid-sentence what I was trying to say and try desperately to find the trail of my original thought, sometimes only after a long awkward pause. As a result, my anxiety level about being "found out" as someone with severe cognitive impairment continues to climb.
I have to fly to Europe for a dreaded week-long business trip tomorrow, the first one since late 2012 when my health was a bit better, and this trip will involve both meetings and socializing...I have an enormous inferiority complex because, while everyone else talks about their hobbies -- skiing, bicycling, running, cooking, wine collecting, etc., their exotic vacation plans, their seemingly enjoyable lives, I have absolutely nothing to say because I have absolutely no energy to do anything besides work. In my free time, I try to take naps, watch TV (although I have trouble remembering the plot from episode to episode) and ingest a vast quantity of supplements. My cognitive problems also snowball into full-blown dementia when I have jet lag, so that is another source of fear for this trip.
I suspect that working non-stop while suffering from this illness will end badly for me. Although CFIDS is not a "respectable/real" illness to the general public, doctors, or insurance companies, I certainly have developed plenty of "downstream" objectively measurable health problems in 17 years of being sick (impaired kidney function, chronic sinusitis, vocal cord paralysis, uncontrolled GERD, recurring bronchitis, severe muscle cramps...all documented by medical tests ordered by doctors who still look at me like I am speaking Swahili when I tell them I have CFS.)
I am not sure what drives me anymore. To a large extent, I think CFIDS has destroyed my self respect. I feel it has twisted me over time into a defeated, worthless person who is not deserving of happiness or joy. So I keep working, because I deserve the suffering. And why not? There will be nothing left of my identity and I will be of no value to anyone else when I cannot work anymore.
Oh well, I apologize for this diary-like post. CFIDS is a catastrophic illness, whether you are able to work through it or whether it forces you to stop working or going to school. I suspect that at some point in the future, someone will have figured out that we really were objectively suffering from a severe disease and that we were deserving of scientific research, fair treatment, accommodation, and sympathy. That time cannot come soon enough.
