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Why I Lie About the Reality of My Chronic Fatigue Syndrome

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When it comes to my chronic fatigue syndrome (CFS), I have been known to tell a tall tale now and then, or simply omit the truth completely. The reasons for this may not be what think — I’m in no doubt of the existence of my illness nor am I unsure of the diagnosis. Nope, those things are as sure as sugar, and the lies are mostly simple things like answering “Fine” to a question about my health or making up alternate reasons for not being able to attend this or do that.

I certainly don’t mean any harm. I just think the lies are easier sometimes. Why, you ask? Well, a few reasons…

There are a few things I only needed to hear once. I have this family friend, close enough to know how drastically my life’s path has been altered in the past three years, who, when the subject of my illness came up, said several times, “Honey, we were all that tired when our kids were young!” Well, no you weren’t. You know, I’m not entirely sure how I came to have this illness, but here’s what didn’t happen… I didn’t wake up one day four years into my parenting career and decide that the “tiredness” I had been experiencing was now sufficient enough to qualify as an illness. No. CFS is a multi-faceted illness with a specific pattern of fatigue that accompanies a whole host of other symptoms infinitely more debilitating than the “tired” one feels in the early days of parenting. I know this because I have experienced both, and they are not the same thing. Statements like these can be annoying and hurtful, so I hope you’d excuse any lies I may offer to avoid these types of interactions entirely.

Another baffling doozy that has come up a few times: “Have you ever thought you might have [insert random illness]?” The answer is quite simply “No.” Why would I think I have I have multiple sclerosis, lupus, depression or Addison’s disease? My symptoms and diagnosis are as familiar to me as the back of my hand. My question is, why would you think that? For me, these statements are not only confusing, but they make me feel as though my integrity is being called into question, as if I don’t know my own illness or have just blindly accepted the first diagnosis that came knocking on my door. For this reason, I make no apologies for omitting any discussion of my illness from future conversations with these people.

Sickness is boring. If on any of the following days of my illness you had asked me the question, “How are you doing today?” these would have been my honest answers.

Day 1: Feeling terrible, probably a flu.

Day 7: Feeling terrible, quite the flu!

Day 14: Feeling terrible. Doctor says it’s nothing.

Month 6: Feeling terrible. WTF is wrong with me?

Year 2: Still feeling terrible.

Year 3 and 4 months: You guessed it! Terrible.

Who wants to hear that? Who wants to say it? It’s boring and yuck, so I figure there’s no harm in offering more creative answers from time to time.

I don’t want people to give up on me. I’ve had this running weekly date with a girlfriend of mine for years, and quite frankly, I love it! But, aside from that, this weekly date has for me become a barometer for the state of my health at any given point in time. Basically, if I don’t go, it is because I am not well enough to do so, and that isn’t always the easiest thing to admit to her or to myself. Occasionally, say if I have had to cancel for the fourth time in as many weeks, I come up with some other excuse like a scheduling conflict or something. The reason is simply that I don’t want her to give up on me. My fear is that she will think things like “Maybe she is just too sick. Maybe it is hard for her to say no. Maybe I should stop asking. Maybe she doesn’t want to come.’ When the reality is I do. I really do.

The other reality is that these thoughts are in my head, not hers, because, for the record, she has never stopped asking.

I don’t want to give up on me. Sufferers of CFS know it is very much an illness full of up and downs, so sometimes with the slightest improvement, I just want to feel optimistic that maybe today’s “good day” is telling of an imminent remission of the illness. Or on the flip side, I don’t want to believe today’s “bad day” is the first of more of the same, so often answers to questions about the status of my illness are as much reflections of where I desire to be than of where I actually am. Maybe if I say I’m fine or getting better or that today’s fatigue was just a blip, I can avoid that sinking feeling that illness has set in for good.

Occasionally, I feel bad for the little lies I tell with regards to my CFS, as though I am contributing the cloud of uncertainty and disbelief that already plagues sufferers of the illness, but I also know that I am just doing what I need to do to get through this thing, day by day.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 19, 2016
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