15 Lies People Believe About Staying Home From Work With Chronic Illness

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When you stay home from work or don’t have a job because of your chronic illness, it’s hardly a vacation. More than likely, your symptoms are flaring to the point where you physically can’t work, and you’re spending the day dealing with pain and fatigue, not having fun. But to outsiders who have only experienced illnesses that get better after a couple days, not working due to a chronic illness may (wrongly) seem confusing or unnecessary (especially to those who claim you “don’t look sick”), leading to hurtful comments that it “must be nice” to stay home.

We asked our Mighty community to share the lies people tend to believe about staying home from work or not working because of a chronic illness, and the truth about what it’s really like. It’s just not true that people with chronic illness are off enjoying a little vacation. Next time your co-worker or friend is out sick or not working, remember that they need support, not judgment.

Here’s what our community told us:

1. “People seem to think it’s a holiday and that I’m lazing about enjoying myself, but in reality I’m tired and in pain and/or feeling sick. All I want is to be able to go back to work and be a productive member of society. Living like this is not anywhere close to a holiday.”

2. “People think I’m cooking or cleaning when it really takes all my strength to get up to go pee or get a glass of water.”

3. “[Co-workers think] waking up any time after 8 is a ‘sleep in’ when in reality it’s never enough sleep. When I say I got up at 10 a..m. or 1 p.m. to shower and they call it a ‘lazy day’ when in reality it’s a regular, difficult and far-from-lazy day. I can actually remember exactly where I was and when it was the last time I woke from sleep feeling like I used to before I got sick (energetic and well rested) because it’s only happened once in the last five years.”

4. “[People think] I cancel appointments or call in to work flippantly, secure in my own sense of entitlement. Instead, I experience crushing guilt and spiraling anxiety when I’m least able physically and emotionally to deal with it.”

5. “We aren’t ‘resting’ when we are in bed. When the body is under attack it is fighting to survive, there is no ‘resting’ involved!”

6.I hear, ‘I’m so glad you got a day to relax. I bet you feel better.’ Nope, I don’t. I just needed the day to continue surviving. Because, I just couldn’t.”

7. “I’ve been asked: ‘Why can you still go on a vacation but you can’t work?’ Or ‘You look just fine on Facebook’… as if because I can’t work, I should never be allowed to enjoy myself, ever!”

8. “You’re over-exaggerating your condition. My last manager seemed to think I could work from home even in a bad flare. I have Crohn’s disease and rheumatoid arthritis. When both flare I can’t even dress myself! I cannot get up and down stairs and end up bed-bound in agony. When they see me in the office I look ‘fine,’ I just have a bit of a limp. Yeah, because at that point I’m having a better day with my health. What they don’t understand is how much effort it takes to get into the office.”

9. “I think a misconception is that a sick day is a day of rest when it’s really a day of struggling endlessly to find any sort of bearable way to relieve symptoms.”

10. “[People think] if you looked fine yesterday and return to the office ‘normal,’ then you weren’t really that sick to begin with. They don’t understand that if they felt like we do on our ‘normal’ days, they’d probably never make it into work.”

11. “I get frustrated when people say they work because they cannot afford not to, but it’s not always a choice of finances over pain/illness. Every time I tried to return to work I was told no.”

12. “Often people seem to equate work absence due to chronic illness with work absence due to acute and temporary illness (even something as simple as a cold). They believe it’s an experience with discrete boundaries and a definitive recovery signaled by the ability to return to work. In reality it is a constant series of negotiations and sacrifices.”

13. “People mostly comment on how I’m not working, or ‘skipping’ things, like I’m picking and choosing and using being sick as an excuse. But they don’t realize how frustrating and sad it is to miss all of those things, as well as the outings or opportunities I miss that they don’t see.”

14. “[People think] it’s fun. It’s really not fun to stay home and be unable to work! I’m not having fun, I’m often in bed in a lot of pain. I’d love to be able to work!”

15. “People think we have less to do. Managing the eight-plus specialists, therapies (physical and psychological) family and home is so much work. Also diets and trying to find answers is a lot of work. Also everyday activities take accommodations and three times as long at times.”

What lies do people believe about not working due to a chronic illness? Share in the comments below.

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How Getting Injured in a Fall Taught Me to Slow Down and Be Mindful

Providers regularly ask whether I’ve fallen in the last 30 days. Last year a nurse insisted that everyone on the floor was considered a fall risk, handing me bright yellow slipper socks with tread on both sides and wrapping a band of the same color around my wrist. Since then my dismissal of this particular question has become increasingly emphatic. I take pride in my ability to extricate myself from lengths of oxygen tubing more gracefully than the average geriatric patient.

Having procrastinated on blogging, today I can affirm I have not fallen in the last 30 days. It has been 47 days since my last fall, and oxygen tubing is inculpable. I tripped on uneven concrete walking in flip-flops intended to make changing into my indoor rock climbing shoes less of a hassle. I fractured a bone in my right palm and had to wear a splint.

I felt particularly unfocused in the weeks leading up to my fall (probably a contributing factor in retrospect). Performing tasks with one hand instead of two slowed me down and made me more mindful. My morning breakfast routine involves a bowl, a box of Cheerios, a banana, a knife, a spoon and a quart of milk. I had to retrieve each item individually and arrange them on my dining room table for proper combination. While I’ve experienced astounding benefits from getting my body moving early and often, I’m finding it equally important to make time for stillness.

Prednisone makes my hands shake, increases my anxiety and gives me bursts of manic energy. Unwilling to stop moving my feet, even with a camera in hand, I missed opportunities to capture beauty. Hours glued to Adobe Lightroom revealed shots marred by motion blur, compositions one permutation away from success. Photographer Minor White famously urges:

“When you approach something to photograph it, first be still with yourself until the object of your attention affirms your presence. Then don’t leave until you have captured its essence.”

Since I normally swing my camera body around in my right hand, I thought I’d have to stop taking photos entirely while my hand was splinted. Instead, I used my left hand to hold the camera and two right hand fingers for pressing buttons and turning dials. Each shot took time and effort, forcing me to pay attention to what I included in the frame.

During a portrait session, I strive to make my client feel comfortable with me and my camera. A lot of people, myself included, are intimidated by a giant lens pointed straight at them. The moment I know I am being recorded, my face and limbs stop behaving naturally. If I can get my subject to relax and forget about the camera for a moment, I can take a photo that captures genuine emotions. In order for them to be calm in front of my lens, I need to be calm behind it.

The factors that make me impatient in the aftermath of my operation are not all chemical. Long-term goal setting has always been tenuous in my chronically ill state. I’m struggling to convince myself that making the most of my second chance at life does not mean being in the greatest number of places in the shortest amount of time possible. While I don’t want to lose my reverence for the gift of life, I want to find stability and allow for relaxation. I do not have to accomplish everything today – just some of the things. The challenge is living every day like it’s my last without being completely panicked that it actually is my last.

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Thinkstock photo via Paul Sutherland.

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Chronic Illness Vs. Sickness

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The Truth About What My Chronic Illnesses Really Look Like

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Many chronic illnesses are described as “invisible illnesses.” Depression, anxiety, chronic fatigue syndrome, Lyme disease, fibromyalgia, autoimmune disease…they all have one thing in common: most of their symptoms are invisible to outsiders.

Like many others with chronic illness, I have become very good at hiding how I really feel. Since I don’t generally walk around with a sign saying, “I have chronic illness,” my friends, family, colleagues and acquaintances, would be forgiven for thinking I’m perfectly healthy.

Before I got sick, I think I’d have found this concept hard to understand. I’d have assumed that no one could possibly hide how they’re really feeling all the time, and that I’d notice if someone was really that ill. Now, of course, I know different.

When my sickness level is a nine out of 10, I stay at home. I call in sick from work or work from home, I cancel my social plans, and I skip my yoga class. No one sees the really sick version of me. Well, no one except my parents and my boyfriend.

When my sickness level is a seven or eight out of 10, I do minimal activities. I might head into the office for a few hours and leave at lunchtime. I might pop to the shop. But that’s about it. I’m likely to do these things with plenty of painkillers, and I’ll avoid speaking to anyone. If I seem quiet or grumpy or stressed, it’s probably just that I’m having a seven or eight kind of day, and I am just about able to make it to the office but I feel too sick for conversation.

When I’m at a five or six sickness level, I’ll do most of my usual activities. I’ll do a whole day at work, I’ll meet my friends for coffee if we’ve made prior arrangements. I do these things feeling very tired, and a little fluey, but it’s manageable and I’m normally able to hold a conversation and keep a smile on my face. Anything below a five on the sickness level is rare, but on the occasional two though four days, I’ll be on top of the world! I’ll be the first one in the office and the last one to leave, I’ll be joking and laughing and making conversation. I’ll be at yoga and then I’ll meet a friend for dinner. I’ll be, for all intents and purposes, normal.

So if you see me and you think I look quite healthy, either it’s a particularly good day, or it is a moderately good day and I am just about holding it together. The true sick version of me rarely shows her face, and if I did, I really think my friends and colleagues would be horrified.

So what does chronic illness really look like? On those days when I wake up and can barely make it out of bed, or when I walk through the front door after a whole day spent in the office wondering how on earth I’m going to make it til 5 p.m… What does it look like, behind closed doors?

There are normally pajamas, dressing gowns and blankets involved. I will often have my head in my mobile phone or on my laptop, researching this horrible disease, trying to find the right balance of self-educating without causing myself panic and upset. There will be no makeup, no brushed hair, no nice clothes. There are lots of cups of tea. There may be a nice dinner if I feel able to make something, or if my boyfriend is around to cook, otherwise, there will be takeaway or leftovers or whatever scraps I can find in the fridge. There are few smiles, few jokes, few memories to be made. There are tears. Sometimes there are a couple of tears that can be wiped away and pushed to one side. Sometimes there are inconsolable sobs as the enormity of how terrible I feel and how tired I am of feeling terrible, comes to the forefront.

Behind closed doors, chronic illness is ugly. It is unwashed, undressed, it is grubby. It is lonely and isolating. It is both stressful and boring at the same time. Sometimes I feel like a fraud for writing about how hard chronic illness is, about how sick I feel, because I know that for anyone looking from the outside in, I look like a normal, happy, healthy young woman. Please know that I hide the truth. Please know that looks can be deceiving. Please know that behind closed doors, chronic illness really is an ugly old beast.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: Julia_Sudnitskaya

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