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20 'White Lies' People With Chronic Illnesses Tell

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Life with chronic illness can be complex and difficult for healthy people to understand — so do you ever find yourself telling a little “white lie?” Maybe someone asks you how you are, and you just don’t have the energy to discuss your latest doctor’s appointment or flare-up, so you smile and say, “I’m fine!”

Telling those little white lies can make social situations easier to deal with when you don’t want to talk about the (often difficult) truths, though they do tend to obscure the reality of the challenges you face every day and the support you may need. So we asked our Mighty community with chronic illnesses to share the “white lies” they tell, and the truths behind them. Let’s reveal what’s not being said.

Here’s what our community told us:

1. “‘I’m looking for a job’ when in reality I am so far away from being able to work. People seem to think that working will make my condition disappear so it’s easier to say that than explain why they’re wrong.”

2. “It’s not so much the lies I tell about my illnesses as the lies I tell to get out of plans. It’s much easier for people to accept you have a scheduling conflict than it is for them to believe you are not well.”

3. “‘How are you?’ ‘Fine.’ *legs are swollen and weeping fluid, can’t breathe, head to toe pain, migraine, too weak to walk.* Why? Because every time I am asked how are you, and I tell the truth people accuse me of ‘dwelling on my illnesses’ or try to give me unsolicited ‘tips’ on diet, fitness, and how so and so was cured with a supplement or a coffee enema.”

4. “‘What did you do on your day off?’ I will lie and say stuff like I cleaned or ran errands. In reality I slept. All day. It’s all I have energy for. But I lie so people don’t think I’m lazy. It has nothing to do with laziness, but most people don’t understand that.”

5. “I’m going to tell you about a slightly bigger lie I tell others and sometimes myself. That I’m not scared. The truth is I’m terrified. Terrified that I have nothing to look forward to but a life of pain and exhaustion… Terrified that if they do tests I will be right about what is wrong. Terrified about everything and nothing and what will happen in the end. But as far as everyone else knows I’m strong, brave, and I have already been through hell and back so I can handle anything. (Or can I?)”

6.I lie to myself that I can control it all. I will always find something to blame symptoms on because I don’t have it in me to accept that a problem cant be solved. The bad attitudes people often have toward invisible illness is the voice in my head now. I can’t even bring myself to say the word ‘illness’ when I’m talking about my symptoms. Even though I have very much ‘earned’ my diagnosis, so to speak.”

7. “I’ll tell people I have a diagnosis and been tested when in reality I’ve been waiting for four years just to see a doctor who could diagnose me. I know I have Ehlers-Danlos syndrome and it’s real and not made up, but I feel like if I don’t have a doctor’s validation it makes me so much less reliable and others are so much less likely to take me seriously.”

8. “‘I’m used to it, so at least it’s not that bad, I know what to expect.’ Biggest crock of crap. I never know what to expect. I am flying by the seat of my pants on a zip line over Niagara Falls.”

9. “‘I have *insert condition.* It’s not a big deal, I manage on my own. I’m totally fine.’ Sometimes it is a very big deal. Like POTS or NCS. If I pass out alone I could get a concussion or hurt myself some other way. But I don’t like it when people go out of their way to worry. It makes me feel like I’m incompetent. I managing on my own is difficult but I do it.”

10. “‘I’m good.’ In reality all my joints are aching, I’m walking around with a heat pack on my neck to prevent a migraine, I’m surviving on crackers because the nausea is so terrible I cannot eat, I’m so bloated it hurts, I’m so fatigued that even breathing feels like an effort and my mind is racing with obtrusive thoughts… sometimes it’s just easier to say ‘I’m good.’”

11. “People ask me what’s wrong when I wince in pain and I tell them I am just ‘sore’ when in reality I feel like I have been hit by a truck, my whole body is in shooting pain, I am nauseous from it, and they reply with ‘Sore from what, you haven’t done anything all day?’ Not understanding the grocery shopping and the cooking I just did did all of that to my body.”

12.I tell my friends and family that if it wasn’t for the lack of childcare, I would work full-time, that I want to work full-time. In reality my multiple chronic illnesses prevent me from working full-time in my current job… I do this not because I’m ashamed of my illnesses but because I think in a small way I am trying to prove to myself that they don’t control me… but at the end of some days it’s hard to admit — but they do.”

13. “I tend to keep quiet about exactly how much pain I’m in because people rarely believe that a ‘healthy’ 31-year-old woman could be in so much pain. I’ve had chronic pain since I was about 25 and other types since younger, and I’m sick of being invalidated.”

14. “‘How’d that appointment go?’ ‘It went great, everything’s the same.’ Truth: they upped my meds and I’m readjusting or they introduced new therapies, but explaining that to someone is just complicated.”

15. “‘I can do this and I’ll be fine later…” — me trying to convince myself I can handle a few chores — sweeping, laundry, vacuuming… all the things ‘regular’ people take for granted and still be OK to go to dinner later with my hubby. Truth is if I do anything now besides rest, I won’t be doing anything later, especially going out.”

16. “I don’t exactly tell what my illness is, it has such a negative connotation. Despite having it since I was 5 when people hear it they automatically think the worst, so I find other ways to say what’s wrong.”

17. “Person: Can you do this thing for me? Me: Sure! I’d be happy to! What’s left unsaid: Which means I may have to cancel everything else I was planning for that day because I don’t know if I’ll have any energy left afterwards or how much pain I’ll be in.”

18. “‘I love it when people drive me around!’ Biggest lie I’ve ever told. When you’re an epileptic you can understand this. I despise not being able to drive.”

19. “‘I’m just worn out’ if I’m asked what’s wrong at work. In reality I’m exhausted and in pain with brain fog and am not sure how or if I’ll get through the day.”

20. “The most common one is ‘I feel fine’ or when people ask me what I do with all my time (I generally tell strangers I’m a housewife, which is true, but I don’t like to tell everyone that part of the reason is because of my health), I’ll often tell people that ‘I spend a lot of time working on projects.’ I’ll tell people about crafts or house projects I’ve worked on, I generally leave out the fact that this is only about 5 percent of my time, and the rest of my time is mainly Netflix.”

Originally published: May 11, 2017
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