Physically, chronic fatigue syndrome (CFS) is a debilitating illness. Strength and stamina both suffer, and simple activities become exhausting. However, it is important to remember that a chronic illness also has profound effects on a person's mental and emotional well-being, and that is what I'm going to share with you today.
I'm going to use a very personal tone here because, while I'm sure many people with CFS can identify with what I'm going through, I don't want to assume that my experience is everyone's experience. I can only share what has happened to me and hope it's a step toward greater understanding.
1. CFS gives me "brain fog."
To begin with, some common symptoms of CFS are mental symptoms. When I start to get tired (and I get tired very easily), my concentration is one of the first things to suffer. I hunt for a word mid-sentence. I read the same passage over and over for five minutes, and it doesn't make any more sense the fiftieth time than it did the first time (being sick wouldn't be nearly as bad if I could have some marathon reading sessions!) I stare off into space for a few seconds and try to remember what I was doing. I get overwhelmed easily and sometimes have to excuse myself from very stimulating situations. Sometimes little things like a trip to the grocery store or dinner with my family qualify as "stimulating situations." Basically, my mind just doesn't handle all the crap life throws at it as well as it used to, and on top of that there are further complications (see everything else below).
2. CFS makes me second-guess all my decisions.
Managing CFS is a delicate balancing act. If I exert myself too much, I could exhaust myself and end up flat on my back for the next few days. On the other hand, if I don't keep trying to be as active as I can be I'll keep losing strength, and eventually I could be flat on my back for the rest of my life. That makes any decision to do anything (or not to do anything) a difficult one, and I always end up wondering if I'm doing the right thing. If I have a busy day, I wonder if I'm setting myself up for a crash. If I decide to take it easy, I wonder if I'm babying myself too much. I can't even trust my instincts, because my instincts are telling me to stay in bed all the time. I can't win.
3. CFS exacerbates my neuroses.
To help me take care of everything in my life that needs taking care of, I like to have little algorithms in place. When those algorithms start to break down, I get tense and edgy. Because I can work through it and continue to function, I don't think I have a diagnosable mental illness; however, I realize there are some things about how I deal with life that are not exactly "normal."
CFS exacerbates this in two ways. On one side, I have more to manage: diet, exercise, day-to-day activities, rest, etc. And because I don't completely trust my own ability to make decisions regarding my expenditure of energy (see #2), I find myself turning to these algorithms more and more. On the other side, the amount of energy I have on a given day is highly variable. Because I can't accurately predict what I'm going to be capable of, my algorithms also break down much more often. It becomes something of a vicious circle.
4. CFS makes me feel like I can't commit to anything.
Another consequence of not having a reliable energy reserve is that if I make plans for the future, I'm never sure if they're actually going to happen. It was a bold move on my part to announce on my various social medias that I was going to be posting this today; I could very easily have made a liar out of myself. Even when my husband casually asks if I can do him a favor, I'm very reluctant to positively answer yes. It's not that I don't want to help; I just don't know if I'm going to be able to help.
This is the big reason I don't have a job right now, and I don't consider myself capable of having one. I'm sure there are some jobs out there for which I am capable of completing each task I would be required to complete. The difficulty is that I probably wouldn't be able to complete them when the employer needs them, and that's a real problem.
In our society, it seems like a lot of our identities are wrapped up in commitments - jobs, relationships, social events, trading favors. Not being able to do those things as reliably as other people makes me wonder: as far as the rest of the world is concerned, who am I? Is my identity recognized as strongly as it used to be, or have I "faded" in other people's eyes?
5. CFS makes me want to throttle some basically well-meaning people.
I'm lucky enough to have a lot of understanding, supportive friends and family members who would never say something like this. However, I run into a lot of strangers and casual acquaintances who hear I have CFS and immediately compare it to some time when they were really tired. NO! My illness is nothing like that one time you had a busy day, and you felt "exhausted" afterwards! I know, because I used to have those days when I was healthy, and my current experience is unlike anything that has ever happened to me before.
I suppress my urge to throttle these people because I think their comments come from a well-meaning place. I think they're just trying to find a way to identify with me, or maybe they're trying to be understanding. Since those are noble impulses, I will give you guys a little hint: one of the most compassionate, supportive things my husband has ever done for me was to admit that he will never fully understand what I'm going through. Meditate upon this!
6. CFS makes me reluctant to discuss the emotional and mental toll it takes on me.
I wrote this post because I thought it was important. It's easy to read a list of symptoms for an illness, but it's harder to understand what they do to a person's mind. It was important to write, but it's also been very difficult. This illness has changed the way I look at the world, how I make decisions, and how I relate to people; that's not easy to admit. I also worry about contributing to the perception that this illness is "all in my head." I am definitely suffering from a medical condition, and it's very tempting to just keep the focus on that and away from how demoralizing it can all be. I feel very vulnerable right now, like I've opened myself up to the assumption that if I can just fix my attitude, everything else will be fine (a laughable assumption, because anyone who knows me will realize that attitude maintenance is something I'm working on all the time). So please, the next time you interact with someone with a chronic illness, prove these anxieties to be baseless.
I will try to make my next post less of a downer!
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