RA Diaries: Owww — please don’t touch me!
For me, having rheumatoid arthritis means I have chronic joint pain. But I must clarify that chronic doesn’t mean constant — I have deep sympathy for anyone in constant pain, and have had just a brief taste of that hellish condition when I dealt with sciatica last year.
Whether or not I have pain has everything to do with how much rest I got, whether it’s raining, whether I spent way too much time wandering around the mall or too much time on my feet cooking. Fortunately, though, the pain is mostly manageable with non-steroidal anti-inflammatories.
But it’s not just about pain. There is also stiffness and inflammation, and those aren’t always as manageable with drugs. They’re also a bellwether for possible pain to come.
Because of that, I’ve never been a very touchy-feely kind of person. Mind you, it’s not that I don’t like to be touched — physical contact is important to me, and snuggling with my spouse is something I make sure to do daily. It’s just that, if you touch me the wrong way — say hug me too hard or grab my elbow or hand the wrong way — it can really hurt.
This is hard to explain to some people, even people who should really know better.
Case in point: my close relative. This relative has always been rather rough and impatient, and when I was a child, did not feel the need to coddle me or even acknowledge my RA. Therefore, this scenario would play out pretty often at my house:
Close relative grabs sore shoulder, hand, elbow, in order to hug, kiss or show other sign of affection.
Close Relative: “I’m not hurting you! Why are you saying oww?”
Me: “It hurts.”
Close Relative: “No it doesn’t! Stop lying!”
Close relative stomps off in a huff. Other close relative then gives me a lecture about being mean and asocial. I am admonished to apologize.
Rinse and repeat.
Now, before anyone calls DCFS retroactively, the close relative has since apologized for being so insensitive to my sore joints. I have accepted the apology, and have no compunction about informing this close relative when I am sore and could be in pain. And I’ll be damned if I will ever apologize for being in pain to anyone, ever again.
But the close relative is just one of several adults who treated me this way as a child.
Several factors were at play here — one is that, as abled and healthy people who didn’t have pain, they simply couldn’t relate. Another is that, even if they had pain, they couldn’t wrap their minds around the idea that a child could have chronic pain. I remember one gent — and no, he didn’t grab me or hurt me — who, after hearing I had RA, refused to believe it.
“It’s not possible!” he kept saying.
Oh, okay. Thanks?
The biggest thing is that, in general, adults don’t think it necessary to respect children’s physical boundaries. It’s fine to pick up a kid, or grab them and cuddle them, or push them aside as needed. Adults touch kids in ways they would never dream of touching adults.
I’ve been guilty of this myself — how many friends’ babies’ heads have I nuzzled? (Baby heads are the best for nuzzling. So downy and soft and sweet. So far from possibly stinky diapers or sticky hands.)
And kids get so used to being treated like they have no right to boundaries that we have to give them lectures about “good” and “bad” touch.
Unfortunately, it doesn’t get much better when you grow up — at least if you’re female. As a woman, you get resigned to the fact that your body is a public commodity, to be ogled and criticized and rated. And when you’re pregnant, it’s open season on your belly.
On top of that, women are expected to be more touchy-feely than men. We’re expected to hug friends and strangers, to kiss on the cheek and comfort and hold hands.
So, my being leery of physical contact, because it may injure an already sore joint, often makes me come off as asocial. Even a harmless handshake is fraught with anxiety, since both men and women (mostly men, though) think finger crushing is a sign of strength.
So what to do? I have yet to come up with a good solution. My friends and acquaintances are familiar with my plight, so they’re sympathetic. But strangers? I have no particular inclination to discuss my health issues with them. I also don’t want to walk away in pain. And I’m going to have to come up with something good very soon, since I have a few work-oriented schmooze sessions coming up this month.
Maybe a double dose of meds will help. Or I can hope it won’t rain.
All text copyrighted by A.K. Whitney, and cannot be used without permission.