One of those, "but you don't look sick" situations.
February 1, 2011 6:54 AM   Subscribe

How do I explain to people the aftermath of what is probably due to mono? People (family, cute girls) keep brushing off my physical symptoms when I try to concisely explain that, even though I'm infinitely better than I was a couple months ago, my energy fuel tank still empties suddenly and unpredictably, and then I feel awful, freezing, aching, dizzy, and extremely sick until I sleep it off?

Part of it is that I've had colds before--I've been sick, yet I felt "sick but fine." And I think that's what people think I'm going through: "Ok you feel sick, so what? I get sick all the time." But, every couple of days I still feel "sick and something is very, very off."

These sorts of things seem to fit me on and off: post-viral dysautonomia, post-viral postural orthostatic tachycardia syndrome (POTS), adrenal fatigue... (Even though I didn't have classic mono symptoms, I tested positive for recent EBV infection. Doc said the test was a pretty decent indicator.)

How do I explain this? I briefly mention that I had a mono-esque illness, but I want people to understand that I can only hang out for a few hours at a time or I risk pushing things too far. Or, I only want to do dinner and not a movie, or whatever. It's one of those "but you don't look sick or act sick" situations.

I'm usually a really good communicator, but I feel like I'm beating my head against the wall. I guess I sort of do want people to understand that every couple of days I briefly feel like I have the bubonic plague or something, even though I don't, and that a couple months ago I was intermittently was unable to leave my apartment, etc.

It's the "sometimes I'm perfectly fine for three days in a row and suddenly I'm not and I don't know when it's going to happen" element, too.

This is the first time I've ever been this sick, and I don't think I'd "get it" if other people tried to explain to me prior to my illness, so...

Is there a way to wrap this up in a neat little package that people can actually grasp? I'm not even sure what sort of reaction I'm looking for, not really sympathy per se. I guess just understanding.

Here's what it boils down to I guess: Maybe it's futile and I just need to manage my symptoms and appear to act a little introverted, cryptic, and strange to people. Hopefully this will be completely gone within the next few months. (And I'd be grateful for that. I know people deal with stuff like this for years or have real but-you-don't-look-sick-chronic-illnesses for life.)
posted by zeek321 to Health & Fitness (14 answers total) 3 users marked this as a favorite
Just tell them you have/are recovering from mono, and your doctor said that intermittent exhaustion was to be expected. If they keep pushing, put them on your "do not hang out with" list. Don't say "mono-esque", even if that's true - it invites speculation, conversation about your symptoms, and (if your friends are kind of jerks like this) doubt. Stick to "Mono - doc said to take it easy, and I find I crash really unexpectedly."
posted by rtha at 7:11 AM on February 1, 2011

Seriously, you just say: "I'm still getting over a pretty seriously illness so I need to take it easy. Doctor's orders."

Anyone who says anything other than "Yeah, good idea" in response to that is being an asshole. And I mean, sure, sometimes even good people are assholes, but it's not your problem. If they give you shit for going home early, just repeat yourself or, if you want, tell them not to be an ass.
posted by 256 at 7:11 AM on February 1, 2011 [1 favorite]

Most people know what mono does to you. I would think a simple "I'm still getting over mono" would be sufficient.
posted by COD at 7:15 AM on February 1, 2011

"I'm recovering from a really bad bout of mono and I still have to rest a lot; three hours is about my limit for active socializing, so I'll join y'all for dinner but I'll have to skip the movie. But I gotta tell you, after holing up in my apartment for so long when the mono was active, it is like super-exciting for me to be out and about and SEEING people and DOING things! I'm so glad y'all invited me, even if I'll have to catch Robot Avengers XXVII on DVD later."

You're seriously overthinking this. If someone asks you can go into the dire specifics of the diagnosis and complications, but "recovering from mono" covers it fine for casual conversation. Just tell people you're recovering, and make clear that you really WANT to be out doing things, even if you have to cut thing short from time to time. (And personally, I'd try to always leave BEFORE I got totally exhausted ... better for your health, and more socially acceptable. And you can always say, "I'm starting to get a bit worn out" even if that's a bit of a polite lie.)

And your follow up joke to "You had MONO???" is "I know, I know -- I need to stop kissing random people in the street!" or "I know, I should have done way more kissing in high school to get it over with then!"
posted by Eyebrows McGee at 7:16 AM on February 1, 2011 [1 favorite]

The Spoon Theory is another metaphor that I (and lots of other folks) find helpful to explain that my energy budget is limited.
posted by hydropsyche at 7:29 AM on February 1, 2011 [11 favorites]

Seconding the Spoon Theory as a way to explain your issue to the close friends and family who need to know how you're really doing and why you're budgeting your energy against crashes. For the rest "I'm recovering from a long-term illness" (specify mono if you want) "and the doctor says I may crash hard, so sorry if I bail on you suddenly" is all you should need to say. It's sad but true that invisible illnesses will teach you which members of your social circle are compassionate, or are your real friends. The ones who ignore "doctor's orders" are people you may want to drop down your social priority list.

(And best wishes for an early recovery!)
posted by immlass at 7:48 AM on February 1, 2011 [1 favorite]

rope-rider's suggestions are good. I had to handle these same sorts of issues back a decade ago when the combination of a car accident and the resulting surgery and complications left me looking quite healthy, but I had the stamina and upper body strength of a 90 year old. Walking up a flight of stairs was a workout. I bought juice in quart containers because a half gallon was too heavy. But since I didn't *look* sick or weak, people assumed I was lazy. (Don't get me started on how being someone that didn't *look* handicapped can get you in a lot of trouble in parking lots...)

Being direct and non-apologetic but non-specific is probably the best. 256's line of ""I'm still getting over a pretty seriously illness so I need to take it easy. Doctor's orders." is pretty much what worked best for me.

Good luck with the recovery. Take it easy. ;)
posted by kaszeta at 7:50 AM on February 1, 2011 [1 favorite]

Nthing the Spoon Theory; I have an autoimmune disease and it's helped me explain my energy budgeting quite often.

Also, pay attention to the language you use when telling people how you're feeling; when I first got sick I got fed up with people dismissing the degree of my symptoms and then I realized that I was saying, "Oh, I'm really tired today" instead of, "I'm really fatigued today". Apparently "fatigue" sounds like a medical problem but "tired" sounds like 21st century life.

I hope you're feeling better soon
posted by camyram at 8:01 AM on February 1, 2011

Carry a cane. Answers a lot of rude questions on sight so you don't have to explain to anyone.
posted by gjc at 8:07 AM on February 1, 2011

Mono was a trigger event for my late wife's chronic fatigue / immune dysfunction syndrome (CFIDS). When she contracted it in the early 1980's, it was called recurrent mono, as that was what it appeared to be. They also called it chronic Epstein-Barr virus, as she kept testing positive for mono.

You may want to get smart about CFIDS, just in case.

I watched her try to explain her symptoms for nearly two decades. You look mostly normal on the outside, and can appear to function quite well until you get stressed, eat poorly, or stay up too late. It's an uphill battle, as most folks only really care about what THEY feel like.

If you can find it within yourself to cut them some slack, you will benefit. They're just human and only understand the most obvious signs of sickness. A simple "I've just never gotten my energy back since mono" or something similar might explain it and elicit some compassion.

Good luck, buddy. I hope it's just a tenacious case of mono and you soon see it as a distant memory.
posted by FauxScot at 8:50 AM on February 1, 2011 [3 favorites]

Response by poster: This is all so helpful, thank you so much!!!
posted by zeek321 at 8:55 AM on February 1, 2011

Not to derail or be too much of a dick but imagine if you had a head injury, depression, schizophrenia or any number or other sickness, injuries or illness resulting in semi controlled mental illnesses.

I have a seizure condition without easily visible episodes. Fatigue and confusion are the results of poor care and is not ever going to go away. As mentioned earlier you have to get tough, proactive and careful. Hoard your spoons. Acquiring a physical symptom can help. My mothers arthritis flares up unexpectedly so she caries a cane. She never needs it but it help explain her pain and means she argues less when she's least capable. I set alarms to take meds throughout the day and make no bones about stopping whatever I am doing to ak them exactly on time. Do i need to do that? No but it's a passive reminder that I take my care an treatment seriously.

If you don't have your health and so on. If someone can't respect that drop them, it's just not worth it.
posted by mce at 10:15 AM on February 1, 2011 [1 favorite]

Please don't over-do it while you are recovering.

Being a type-A person, I pushed myself too hard while recovering from glandular fever (Mono)... and now I have been diagnosed with chronic fatigue and fibromyalgia and am so exhausted that I can no longer work.

Please take the rest that you need... I wish I could go back in time and rest more, hopefully then I wouldn't be so sick/exhausted now.
posted by Sockpuppets 'R' Us at 3:02 PM on February 1, 2011

Say exactly "even though I'm infinitely better than I was a couple months ago, my energy fuel tank still empties suddenly and unpredictably, and then I feel awful, freezing, aching, dizzy, and extremely sick until I sleep it off." Unless they're genuinely ignorant of Mono and what it does to a person they should understand. Seriously, I can't imagine what could be clearer.

I say this as a formerly cute girl who would have fallen all over herself to avoid over-taxing a guy she liked while the poor thing was recovering from Mono. I probably would have brought you soup, even.
posted by Neofelis at 3:30 PM on February 1, 2011 [4 favorites]

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