Let me explain. Most chronically ill patients, who live with an invisible or rarely visible illness or disability will, at some point or another lie about their symptoms. Lying about how we're feeling is one thing as most of us will say "we're fine" when we're really not. But we often lie about our symptoms in order to avoid crazy looks, side eye, or the "what are you talking about" conversation where we have to elaborately explain ourselves. And I don't mean lying to health care professionals because we're embarassed about our symptoms, I mean lying to people who don't know about our illness or don't understand our disease/condition (coworkers, family members in denial, distant friends, the health nut friend who believes if you just run a mile and eat some broccoli you'll feel better etc.)
We lie because it's one less thing we have to emotionally deal with and mentally process. One less exhausting conversation that doesn't need to be had. In the last 7 years, here's a quick list of "lies" I've told family, friends but especially bosses and coworkers when I've had to take yet another sick day that they will undoutedly not understand or feel empathtic towards if they heard the truth.
1. The lie: "I have food poisoning."/ The truth: "I have really terrible, debilitating acid reflux and GERD that renders me incapable of moving." Why lie?
Because no one in their right mind would believe that I need a day off from work because of acid reflux. But the truth is, I do. I once ate an (ONE) Oreo cookie and I was burping and regurgitating acid for 12 hrs. My esophogus was on fire, I couldn't find a single comfortable position to lie in, and no amount of Tums or Pepcid or Nexium was working. Patients with scleroderma suffer from excess collagen build up in the esaphogus, this leads to painful heart burn and probelms with digestion. So technically, "food poisoning" is what's happening. Your body is technically feeling poisoned by almost anything you ingest, made really worse by chocolate, acidic foods (pineapples, lemons, oranges, tomatoes, etc), and even a glass of water on an empty stomach.
Therefore, when I suffer from terrible GERD, (which happens only occasionaly now since I eat barely anything) I simply tell people who don't know my background that I have food poisoning, from what? Bad Chinese, or Taco Hell or Pizza...and it shuts them up quickly, because NO ONE...and I mean NO ONE wants to hear the details of food poisoning.
2. The lie: "I didn't get much sleep last night."/ The truth: "I haven't slept in 2 weeks due to chronic pain or prednisone and it's finally catching up to me, if I do anything other than stare at a wall there's a possibility I will completely lose my shit and someone will get hurt." Why lie?
Because if you tell people that the reason you look like a zombie is because you haven't slept in 2 or more weeks they will assume that you suffer from depression, watch too much Netflix, are irresponsible, or should probably just take some melatonin or workout more. Normal, healthy people are under the false delusion that not sleeping is a choice. Trust me, it's not. But you can't explain that to normal people, they just don't get. "Oh have you tried going to sleep earlier?" "Have you tried medicine, but you shouldn't cause then you'll get dependent." "I drink a glass of wine and that puts me right to bed, you should try it!" "Work out more, it will help you sleep better." And on and on. Because apprarently the only people who have a legitimate reason for not sleeping are people with babies.
3. The lie: "It feels like I'm coming down with something."/The truth: "Every muscle in body aches, brushing my teeth requires more effort than it would take you to run a marathon, my joints are swollen, I have chills, and my skin hurts." Why lie?
Because saying all of that requires too much effort. And unless YOUR skin...yes SKIN on your ENTIRE body has ever hurt from something other than a burn, you don't understand what I'm talking about. If I say I'm coming down with something which usually means a flare up, at least all you'll tell me is to rest and drink some OJ (which I can't do anyway because of the acid reflux), but I'll smile and nod and the conversation will be over. Then you'll sanitize your hands and walk away.
4. The lie: "Sorry I can't go out tonight, this weather is miserable."/ The truth: "I'm miserable. This weather is making me miserable. Everything hurts. I'm fatigued. It's too cold or too hot to do anything but sit on this couch like a human vegetable. I feel 80 and I'm only 30. No, I don't have the energy to traipse around town in this miserable weather, feeling miserable." Why lie?
Because if you tell people..at MY age...that the weather is making your joints ache, they give you side eye and say obnioxious things like "You're too young to have arthritis/feel the weather in your bones....!" No. I'm. Not.
5. The lie: "I'm just tired. I had a really long week."/ The Truth: "I'm EXHAUSTED. Fatigued. From getting out of bed and making it to the couch." Why lie?
Because "fatigue" is not considered a disease, (recently Chronic Fatigue Syndrome has been renamed and officially classified as a disease, but it's still not repected among the average layperson). If people knew what I REALLY did all week and still had the nerve to turn down social events they would just assume I'm a flake, which they probably already do since most people assume that working from home means I get to sleep all day and work in my pajamas, but all it really means is that I have to juggle a 40hr work week around doctor's appointments, labs, prescription refills, being on hold, paying medical bills and etc. But people's perceptions of what they think I do all day don't bother me anymore. Let them think what they want, I know what I endure every single day.
6. The lie: "Sorry I didn't call you back. The day got so crazy busy."/The Truth: "I really am sorry I didn't call you back, but my brain fog doesn't allow me to remember what I'm doing while I'm doing it much less who I need to call back, or what I need to or should be doing in the next five minutes." Why lie?
Because admitting that you're an easily distracted 30 year old does not bode well with co workers or your boss. I've lost track of what I'm talking about while I'm saying it at meetings and on conference calls. It used to bother me a lot, now I just shake it off and pretend like I'm the ditsy one of the group. We all laugh about it and let it go. The less I make it an issue, the less it becomes one. I've learned to take copious notes though!
7. The lie: "I'm just emotional/I'm PMSing." /The Truth: "I am incredibly sad and probably depressed because dealing with chronic illness and pain is mentally and emotionally exhausting but I can't cry like I want to because that only makes my illness worse, so I have to bottle it up inside and cry and mourn in short bursts so that I don't have a stress-induced flare up." Why lie?
Because if you tell people the truth they will insist that you should just "let it all out...it will be good for you." But they don't understand how debilitating a flare up can be...hmm should I just cry it out for a whole day and then be bedridden for a week, or should I just cry quietly in my car or in the shower every now and again for 2 minutes and still be able to function? I'll go with the latter, thanks.
8. And the lie of all lies, the one that gets used most often: "I just don't feel well."/ The Truth: "I am having a terrible, horrible, no good very bad day...every day this week and most days of my life. I'm probably having tachycardia, or shortness of breath, or side pain, or high blood pressure, or low blood pressure, or fatigue, or nauseau, or swelling, or pain, or side effects from one of the many drugs I'm taking or any combination of the above." Why lie?
Because, no one, who doesn't really love you actually wants to hear the truth. (Except your doctor, and that's only if you have one that acutally cares) They don't want to hear that you're not "better" and that you're not going to "get better." That your existence is one of perpetual chronic pain and illness. That some days are just a little less worse than others. That your body never lets you forget how hard it's working just to function. Because minimizing our pain allows us to exude a little bit of normalcy. And, again, because explaining all of your symptoms to someone who doesn't know you well makes you sound like a hypochondriac and how could someone who doesn't have cancer, feel so sick? Impossible!
This is not to say that we don't share our deepest and darkest moments at all, we do, but only with those we can trust with the information. I don't mind lying, it's saved me a lot of time and internal eye rolling at well intentioned but ignorant comments and suggestions. And I guess the cat's out of the bag now, but truth is sometimes even the little white lies and half truths can be hard to keep up with.
Did I say I had food poisoning or the flu this time?
What did I just say I was doing on FB? Better not post something witty and funny on FB if you've told someone you're having a bad day cause then they won't believe you.
Didn't I just say I was PMSing a week ago...?
You kind of start to feel like Huck Finn and it can be a little exhausting, but I suppose it's a fair trade off for having to constantly explain and justify the unpredictability of your life and illness to those who just don't or won't get it.
What white lies or half truths have you told about your illness or symptoms?