Leslie, who writes the blog, “Getting Closer to Myself,” wrote a post today about chronic illness and asking for help. In it, she asks “If you are chronically ill, are you sick, too?”
Leslie has lupus. Recently one of her relatives told her that she didn’t view Leslie as “sick.” To her, people with cancer or mental illnesses qualified as “sick” but Leslie, whose lupus frequently makes her feel perfectly awful, doesn’t. Leslie’s lupus strikes at random, and like most of us who cope with chronic pain and illness, she tries hard to appear perfectly healthy and well even when she’s not.
Dictionary.com defines “sick” as “afflicted with ill health or disease; ailing.” The same website defines “ill” as being “of unsound physical or mental health; unwell; sick…”
Obviously, you can have a chronic illness and have the flu, too, just like you can have a broken leg and a bad cold. But I have never thought of myself as “sick” or “unwell” just because I have rheumatoid arthritis. Certainly, it’s a disease that can make my body unsound and ailing, but those conditions aren’t constant.
Even the hip bursitis I’m dealing with right now doesn’t fit the meaning of “sick,” to me, even though the pain from it is constant. Instead, I think of it, simply, as pain.
Like Leslie’s relative, when I think of “sick,” I think of someone with the flu or a stomach bug or pneumonia. And, like her, when I think further into the other, various meanings of the word, I think of a pedophile or a murderous madman like Charles Manson. People like that are truly sick. But I don’t think of Leslie and her lupus. I don’t think of myself.
This is not to say that I am not occasionally sick with the symptoms of RA. But I think of it more as being “ill,” and as being temporary. I am not a “sick chick,” as a group blog about chronic illness calls itself, in the plural. To me, that phrase brings up an image of several preciously delicate female baby chickens with the vapors, draped languidly over multicolored fainting couches, each one fanning herself weakly, and with a jeweled vial of smelling salts close to hand.
I really don’t fit the bill. Sure, I have an autoimmune disease that sometimes makes me feel tired and ill, and sometimes makes my joints stiffen and become so painful that moving is difficult, if not impossible. RA permanently disables many people who get it, but hasn’t done that to me yet. And even if it does someday, I still won’t be “sick.” I still won’t be “ill.” I’ll simply have RA, and when I’m not flaring, I’ll feel just fine.
“Sick” isn’t another word for “chronic illness.” It’s just sick.
And as for asking for help, which was the main focus in Leslie’s post? Not looking “sick” or acting “sick” when we’re flaring makes it pretty hard for people to understand that we do have a chronic illness that occasionally flattens us. And not appearing or acting sick definitely makes it hard for us to ask for help, since we’re proud of our independence, work hard to hide our disability, and really dislike admitting defeat, which is what asking for help often seems like.
These issues will always be a part of having a chronic illness and coping with chronic pain. They always have been. And there’s no easy solution that I can see.
Still, I’ve learned over the years to swallow my pride and ask for help when I need it. I don’t always like to, and the people I ask help from aren’t always gracious about providing it. That, too, is simply reality. Life doesn’t always give us roses. If we’re lucky, we have friends and relatives who do their best to understand us and treat us with love and compassion. But if they don’t, we need to understand that sometimes, they’re just simply clueless. If we haven’t told them the truth about our condition or explained it to the best of our ability, then we can’t expect instant empathy from them.
If we have explained and they’re still not helpful or understanding, then we have to look inward to pull from our own reserves of strength and courage. We also need to widen our circle of friends, and try to find the sort of people who are gifted, like us, with toughness and empathetic compassion.
It’s always a challenge, isn’t it.
Another great post – and I agree with absolutely everything you’ve said!
Wren, I really liked reading this post because I don’t consider myself “sick” either. In fact, I feel a little offended by that word for some reason. When I describe myself as feeling “sick” I hope people realize that it means a cold or flu as you mentioned (hopefully they don’t think of me as sick in the other ways you described 🙂 although I too think of those as sick). I think that I have finally come to the conclusion that for the majority of people, they will never understand what we feel with our chronic illness just as I can never understand the situation others are in because I have never had to deal with it. We can’t understand everything.
I suspect, Cathy, that you and I are alike in many ways. I’ve always tried to “put myself in another’s shoes” (sometimes to my own detriment, in the end), hoping to understand why people do and say things the way they do, and to understand their pain and emotions when they’re ill. But try as I might, I often can’t do it. Sometimes we just have to move on.
I, too, would agree that RA doesn’t generally qualify one as “sick.” That’s not Leslie’s situation, however. Lupus adds an extra twist; she’s been in and out of the hospital, and from what Leslie shares in her posts, I think she often qualifies for the “sick” label.
Sometimes we forget how far treatments have come. When I was first diagnosed, the doctor wasn’t sure if I had RA or lupus (or both); when I told friend (who retired from the medical field) about it, she said, “Oh, you can’t have lupus. You’re too old. Lupus is something at teenage girls are diagnosed with and they don’t live to be 20.” Not that long ago lupus was considered fatal.
Oh, dear. I didn’t mean to imply that Leslie’s lupus doesn’t make her sick. I’ve been reading her blog for quite a while, too, and I know she’s been quite ill from it many times.
That said, she’s also written many times about how she hides her illness, trying to face the world as a normal, healthy person. It’s that aspect of her recent post that I think I was reacting to, that and not being willing, myself, to accept the label of “sick” when referring to my RA.
Leslie is a smart, courageous and thoughtful young woman, battling an awful disease that can, and has, knocked her down in a variety of ways, joint pain and disability being just one of them. I’ve nothing but admiration for her. 😉
Such a thought provoking post. Of course, any time we try to put a label on something — or someone — it should provoke some thought. I think of a chronic condition, like rheumatoid arthritis, as just that — a condition. Sometimes it will rear its ugly head and you might become unwell, but you (hopefully) return to your “normal” condition (which includes living with a disease). I agree that in the US we tend to associate “being sick” with something that’s caused by a short-lived virus or bacterial infection (or as Wren points out, severe mental illness). While I don’t consider myself sick, I don’t ever consider myself completely healthy, either.
I don’t think of myself as “sick,” either. In an odd way I suppose I see my RA as just part of who I am – not a fun part, but a part nonetheless. It’s always been there, so it doesn’t feel foreign the way “sickness” would.
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