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8 (Wrong) Things People Often Say About My Chronic Illness – and the Truth

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Not exactly new ground to tread I grant you, but here are a few common misconceptions on life with chronic illness I’d like to clear up if I may. (Side note: this is based solely on my own experience.)

We’ll look here at some of the more common phrases, unfounded expectations and downright ridiculousness we with chronic illness encounter on an often daily basis. This list is by no means exhaustive, but it is frequently exhausting.

1. “You can’t be in pain all the time.”

Firstly, never underestimate what I can or can’t do in living with chronic illness. My tolerance for pain, discomfort and general life-upheaval is as high as Willie Nelson, and over time I often find myself able to compartmentalize pain. I slot it into my daily life because I have no choice but to. Of course, there are days where my pain is much worse than others, and sometimes I may need to take time off work, or visit the emergency room, or weep into my cat’s fur; none of that can be helped. Pain comes in waves and often, despite my vast experience, I just can’t stay on the surfboard. There’s no shame in that either; but the misconception that pain can’t be a constant is simply not true. Even on my so-called “good days” I may still experience discomfort, anxiety and pain: of some sort. It’s only unbelievable for those who don’t have to live with it.

2. “You look fine, so you must be feeling fine.”

This is one of my absolute favorites. If anyone who said this had a glimpse into what effort it took to make myself look halfway decent and less like a swamp monster they wouldn’t be so bold as to say it in the first place. It’s no exaggeration to say that showering is a challenge, drying my hair is exhausting, painting my face seems fruitless as I’m always convinced my pain is written all over it. It’s true that when I do force my sorry carcass into dressing up and looking good I feel more positive about myself; but it doesn’t eliminate my symptoms – it’s just a skilled mask. It’s performance art, and I’ve become a master at it. Never judge a book by its cover, or a patient by their costume.

3. “You haven’t tried x, y or z – and if you did you’d be better.”

Please believe me when I tell you that if I thought for even the most minute of moments that something would cure me, I’d be all over that. As a professional patient, I listen intently to my doctor’s advice, I follow it as best I can, and I try to live as healthy a life outside the clinic doors as I can. OK, maybe not all the time, I’m not a Grade A sickly student – but those of us who want to feel better generally try everything we can to get there. Of course, I’m not suggesting that offering advice is wrong; it’s not and it often comes solely from a place of care and concern. But the effect it has on those of us with a chronic illness can be significant as it often makes me feel I am seen to be not “trying hard enough” to get well, not doing as I’m told, or I’m not knowledgeable enough about my own condition – all of which generally couldn’t be further from the truth.

4.  “You’re just being lazy.”

This one is flat out infuriating. Chronic illness is debilitating, exhausting and often all-consuming. The idea that I am just not doing as much as I can at home or at work is incredibly upsetting. The amount of effort it often takes just to pull myself out of bed each day can be enormous, every step towards getting a chore completed or finishing a task I take as silent small victories; to have them minimized or decimated as a lack of effort is an incredible self-esteem setback.

5. “You couldn’t be doing x, y or z if you were that unwell…”

Again, an assumption based solely on what a “conventional” idea of illness and/or disability looks like. The current dictionary definition of “disability” is as follows: “a physical or mental condition that limits a person’s movements, senses, or activities.” Any condition that “limits” us can fall under this banner. Invisible or not. Because I’m not in a wheelchair, carrying a white stick or wearing a government-issued “I am disabled. Please treat me like a normal human being.” badge, doesn’t mean my disability is any less valid, or any less “real.” To assume what I can and can’t do is unfair and baseless. You’re limiting me before I have even begun. I am capable of a myriad of seemingly impossible tasks despite my illness; that’s just another aspect of what makes me wonderful.

6. “It’s all in your head…”

I don’t know about you, but my head is far too full of Jon Hamm and cats to make room for inventing an illness. If I have any spare energy I’ll be using it to clean my house or walk my dog, not make up imaginary symptoms. Pain is never just “in the head” because it demands to be felt; it doesn’t wait in line or patiently arrive at the end of a busy day, it appears when it wants and forces itself upon me whether I like it or not. (I don’t.)

7. “Being home all day must be the dream!”

Have you seen daytime TV?! It’s great if you want to see an endless stream of adverts willing you into debt or closer towards your imminent death (Make a will! Sell us your car! We’ll buy your house! Sell us your vital organs! You’ll be dead soon, you don’t need it!). No one wants to be stuck in bed all day. It might seem like a fun distraction from reality, but when I am off work and ill, it’s for a reason – namely my inability to function. “Duvet days” are replaced by sick bowls and enough painkillers to flatten 55 elephants.

8. “You’ll feel better once you’ve had some rest…”

I could sleep for a hundred years and it wouldn’t put a dent in it. Chronic fatigue commonly goes hand-in-shattered-hand with chronic illness and is a whole separate entity from simply feeling tired. It is an overwhelming need to rest, my body and mind constantly on the verge of shutdown. It’s wading through treacle. Napping can be useful, but it’s simply foreplay to my main irresistible desire which is a full blissful night of uninterrupted sleep. This is often an impossibility as so much of my medication can cause insomnia, broken sleep, getting up through the night due to cramps, pain and nausea. Putting my head on the pillow is a happy relief from an exhausting day, but it is by no means a miracle cure. It’s just another sticking plaster holding me together temporarily.

Photo by sergio souza on Unsplash

Originally published: October 29, 2018
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