Stop Saying 'Must Be Nice'

Whether it’s envy or disdain that prompts the impulse, when someone tells you they don’t/can’t work due to chronic illness or disability, do not say “Must be nice to stay home all day.” or any variation of that phrase. See also: “Wish I could do whatever I wanted whenever I wanted.”

Guess what? Having a chronic illness or disability is not nice. Not in the least. And, gasp shock, we don’t get to do whatever we want whenever we want. Far more often, our illness or disability prevents us from doing what we want to do.

Like work.

I was diagnosed with Fibromyalgia a couple of years ago, but had been suffering the symptoms for many years prior. I went through reams of tests. Rheumatoid arthritis, Lyme disease, endometriosis, bone cancer, just to name the big ones. There were more. So many more. Every new test always came back with the same result: negative. I was also hospitalised a few times, underwent a laparoscopy and had an MRI (which discovered a prolapsed disc, just to add insult to mystery). For those who aren’t aware, this is pretty much how Fibromyalgia is diagnosed. Process of elimination. Anyway.

I dread the question: “What do you do?” Hearing it gives me that sinking stomach sensation, because now I have to explain that I don’t work, and why. It’s not just a simple answer, because I have to correct the assumption that I’m unemployed-but-looking, or a stay-at-home mother. There’s also the added joy of trying to explain just what Fibromyalgia is and why it makes working any sort of ‘normal’ job all but impossible.

Fibromyalgia is pain. It’s a bone-deep ache, it’s shards of glass stabbing into your joints, it’s a burning sensation as if your muscles have somehow been set on fire, it’s sharp bolts of pain like you’re being randomly zapped with a cattle prod, it’s your head feeling as if the Hulk is crushing it in his hand, it’s laser beams of death being fired into your skull, it’s cramps so bad you can only liken it to an Alien chest-burster that got confused and is now tangled up in your guts.

Fibromyalgia is exhaustion. It’s having barely enough energy to crawl out of bed to make it to the loo before crawling right back into bed again. It’s the tired of having been active and on your feet all day after only three hours of puttering around the house to make breakfast and do a bit of tidying. It’s a sledgehammer of sleepiness where you’re perfectly fine one moment and the next can barely keep your eyes open.

Fibromyalgia is confusion. Cognitive dysfunction, also called fibro-fog. It’s forgetting what you’re doing in the middle of doing it. It’s losing words and having to struggle to finish a sentence. It’s forgetting names two minutes after hearing them.

Fibromyalgia is completely unpredictable. Asking me if I’m going to be feeling all right in three weeks/days/hours is like asking a Magic 8 Ball... well, anything.

I never know when I’m going to have a good day or a bad day, or when a good day is going to turn bad. All I can do is be hyper-aware of the signals my body is sending me and adjust to hopefully keep things at a balanced level.

So when I say I don't work due to chronic illness, and get the reply “Must be nice.” or “Wish I could stay home all day.” it’s more than a slap in the face. More than a punch in the gut. It’s a full-on Bruce Lee just flying-kicked me through a brick wall. Whatever the intention of the person saying it, whatever they might be thinking, it only comes across as one way: condescending. Because I have an illness, all of a sudden I am ‘less than.’ ‘Not good enough.’ I have been judged and found lacking as a person.

I didn’t ask for this. I didn’t want it. I wish I could work. I wish I didn’t need a cane for short distance walking. I wish I could commit to a long day out without needing a wheelchair.

Having Fibromyalgia, or any other chronic illness or disability that makes doing ‘normal’ things like holding a regular job difficult to impossible, is nothing to be envied. It is not nice. I can’t say that enough. It is not nice.

Yes, most days I’m at home and able to indulge in my crafting hobbies, my gaming, watching favourite TV shows and films, and that sounds wonderful right? It really, really isn’t. If other people think I’m lazy, just imagine how I feel, when I want to a productive member of my household. When, on a really bad day, I can’t even get out of bed, but there’s laundry to fold and dishes to wash and any of the other innumerable everyday tasks of keeping a house tidy. When, on a bad day, just doing a load of dishes or folding the laundry leaves me feeling like I just ran a 5K marathon.

Constant pain of varying degrees and types, constant fatigue of different levels, takes its toll, and not just physically. Mentally and emotionally as well. I am always fighting against depression, against feeling worthless and useless, against feeling like I’m nothing but a disappointment to everyone around me, against feeling like a burden on my husband. I might be outwardly laughing and smiling, but on the inside I’m a dark, writhing mass of self-recrimination and guilt.

So tell me again how that “Must be nice.”