We know each other even though we don't know each other

[brightlotusmoon]

Thanks to another trip to Michael's craft store, I have a new set of Faber-Castle Pitt artist pens below Fine, and Calliope has a Beanie Boo dolphin to cuddle, which she has been doing. I have an owl, which seems to work well as a knee pillow.

We went to the nearby Whole Foods as well, where I found my loved chocolate hemp milk, Guayaki Yerba Mate energy shots in Lime Tangerine, Orgain Chocolate Nutrient Shakes, a bottle of Acai+10 Superblend with Seabuckthorn and Mangosteen, and the rare Badger Balm large Lime lip balm. Adam picked up some fabulous cheeses, and a Coffeeholic Cream Cake for me.

Mom called to chat about an NPR medical science podcast about migraines and the placebo effect, and I revealed that forty percent of my smaller headaches can be slightly reduced by intense meditation after taking certain supplement pills. Good talk. Doesn't work all the time, doesn't work for the more intense symptoms, but I know how powerful placebo effects can be for mild and minor pains sometimes.

Luna and Calliope seem to be starting a... well, a tolerance, on Luna's side. As long as I give Luna attention first, she is nice to Calliope during cooperative play, feeding, brushing, etc. As long as Luna Moon knows she is still the precious queen and Calliope Io is submissive, there is peace. And Jupiter has been gently playing with Calliope, with the occasional soft bap on the head. I am pleased overall.

So, while at Whole Foods, I was limping down an aisle with my blue aluminum cane, right behind a tall man who had the same cane, in sparkly black, and we smiled at each other. "So, how are you?" he asked. I said, "Oh, well, the back pain and sciatica are acting up. How about you?" "Yeah, I'm going to need hip replacement and knee replacement soon," he said. "Oh, ouch," I winced. "I can't imagine. I mean, I'm 34, I was born with cerebral palsy, I'm still learning how to use this," holding up my cane. He nodded. "Yeah, my whole left side has been crazy for years." "Oh, mine too! I have spastic hemiplega on the left! The chronic pain has been getting worse for a long time, but I don't need surgery. Yet!" We grinned at each other. He looked around forty or so and over six feet. I could see right away that his joints were bothering him. "Well," he said, "You look absolutely lovely!" I smiled widely and said, "Thank you! You too!" He grinned back and thanked me, then said, "I hope the pain reduces as much as it can." And I said, "Same for you. Good luck with the surgeries." We said our goodbyes and hobbled off. It was as though we had been friends who hadn't seen each other in a while, commiserating in that cripple language that stays away from "Feel better" and steers toward "I hope your symptoms ease up" which, well, we all understand in the chronic pain community.

And that got me thinking. People tell me "You look beautiful/lovely/great" and of course the silent "even though you're in pain" follow-up. And I actually honestly don't mind that at all. It isn't an insult to me. I know they're usually talking about my chronic pain specifically, not my disabilities as a whole. It's an unspoken thing - "You're chipper and glowing and not letting the pain show, rock on with your badass self." I know that so many cripples would see it as a back-handed compliment and insult, because it totally can be. But for me... I guess it lifts my spirits, especially and specifically when a fellow cripple says it and even able-bodied people who may have invisible illnesses. It is something I need to hear from other disabled folks, because even when I think I look hideous and shitty, to hear someone tell me I look great despite my pain makes me happy, which in turn makes me feel psychologically and psychically better, which helps me try to combat the symptoms, etcetera.

So, my fellow chronically ill and disabled folks, how do you react to such a comment? Is it an insult or backhand compliment for you? Is it a lovely compliment? Do you view it differently when it is said by other chronically sick and disabled people as opposed to able-bodied people?

Comments

[naamah-darling.livejournal.com]

I tend not to take it as "You look great . . . for someone so depressed she can't tie her shoes." I just take it as a compliment. Unless they ARE using it immediately after I say something like "I haven't done laundry in two weeks or showered in the past three days," in which case, it's still a compliment, because I'm kind of proud not to look like a mess at that point.

It's still something I steer away from saying. If I say "You look great!" or "You're beautiful!" I really mean it. Like, actually mean it, not just "even though" or "in spite of."

As long as the compliment isn't verging on "You look great . . . therefore you can't be sick because you DON'T LOOK SICK!" I think I'm good. Who it's coming from has an effect, but not as much as it seems to for other people. And that's fine. It really bugs some people, and I totally get why, which is why I try not to do it DURING conversations about how shitty someone is feeling. There are other times and places to drop that compliment. Like selfies. That's why I like selfies in general. It's all "NOW WOULD BE A GOOD TIME TO PAY ATTENTION TO MEEEEE!" and I'm like "ALL RIIIIGHT!!! AWESOME!!! LET ME TELL YOU HOW HOT YOU ARE!" People who complain about them can bite me.

The other thing I don't like is when "You're beautiful!" or whatnot is used in a way that . . . implies that knowing that should reduce my depression? If that makes sense? Because it doesn't, overall. It gives me a nice hit of approval, but it doesn't help overall. Possibly because of the dysmorphia, which means I may never viscerally believe that. My appearance will always be a source of conflict for me.

[brightlotusmoon.livejournal.com]

*nod* I'd rather take it as a compliment rather than spend energy wondering "what did they meeean??" especially when it's about the chronic illness. BUT - since I, too, have dysmorphia, there is that part of me that will want to deny and rebuke it because of my symptoms. Like, the guy didn't know I was in a depression episode, and he didn't need to know. No matter what, he thought I looked good even though he knew I was hurting. Fine by me. It wasn't like "You look pretty... for a cripple." But there have been lots of times when people have implied just that. Because the chronically ill somehow can't look good? I guess it's why I feel better when someone who is ill says it, once they reveal their issue, naturally.
But when someone assumes that their statement of "You're beautiful" might be a treatment for my illness, it just feels... ew. This guy wasn't implying that, he was just telling his honest feeling, and that was all I concentrated on, because I knew he knew what it was like, which was why I returned the compliment. Because he did look good, and I could see he was in pain.
Er, I'm not sure that made sense. Migraine, you know.

[naamah-darling.livejournal.com]

No, it makes total sense!

That was a lovely interaction you had. A really great example of people just "getting it."

Like I was saying to a friend about sympathizing with someone else's grief, "If you've never been there, there aren't any right words. If you have, no other words are necessary." When I lost my mom, people would either respond with sympathy, with awkward sympathy, or they'd say "God, that sucks. I lost my father/mother/sister/important person X years ago, and it was really hard." And when they revealed that, I was like "Oh, then you get it. Good. Thank you."

My skepticism about people goes down a lot when I find out that they or someone close to them has major issues with physical or mental health. It means I can assume a baseline level of familiarity with things, instead of having to run everything through a translator going both ways. This isn't an "I hate and mistrust people" thing, it's an "I'm never sure how much WORK people are going to be" thing. And when you have a limited number of spoons, how much work people are to be around is a major issue!

[oneonthefence.livejournal.com]

I think it really depends, but I may be coming at this from a slightly different perspective. Three scenarios to illuminate what I mean:

1)I am in Starbucks, enjoying a free 20 minutes before picking up James from school, and I stand up to get a refill. I leave my cane at the table and walk as "normally" as I can to the counter. Someone says something to me - "can I get your cane?" - and I say no, this is a short distance, it hurts but thank you, I'm okay. That person then says, "You're so young, BUT at least you still have your beauty." Or sometimes it's, "A person as pretty as you shouldn't be hindered by a cane." In those cases, it feels a little backhanded. Do I think that person finds me beautiful or attractive? Yes. Do I think they'd find me more NORMAL without a device to help me walk, and therefore, might just stare at me instead of making a comment? Absolutely. But it varies on the person. Sometimes, the comment is sincere - "I think you are beautiful." But if I KNOW that person has seen me walk with the cane and then that person makes a comment about it, followed up with the beautiful comment, it's backhanded.

(The greatest time someone called me beautiful was when it was supposed to be an insult. I was leaving the hospital, wearing a normal tank top and jeans and had my hair then, and accidentally cut someone off while walking. The guy said, "Well, thanks, beautiful. I'm only letting you get away with that because of DAT ASS." I turned around - and he saw I was 36 weeks pregnant, and had come from the OB center for my three-times-a-week monitoring. He shut his mouth, but oh my GODS, it was funny.)

2)When you look like you are suffering, people are most apt to call you beautiful to give you "strength" (unless you are modeling. I've seen both sides of this coin, but one is vapid, and one is not). During my spinal tap - the one the tech messed up twice, and then I had to have performed under fluoroscope - in 2009, I was a mess. I had EEG goo in my hair. I hadn't showered in five days. I didn't even know what I looked like, and frankly, didn't care. But as the one tech prepped me for the tap, the other tech sat next to me as I cried, and he talked to me, and he said, "You are so young, and you are so beautiful. I can see you are strong. This will be nothing to a girl like you." And the words - though they could have been - weren't empty. He meant them. I could tell by how he looked into my eyes. Therefore, I can't forget that moment where a dirty 27-year-old girl actually WAS beautiful, despite the circumstances.

3)Cancer makes people feel ugly. I'm obviously not kidding, because, well, here I am. My type isn't the wasting-away look, either. I am bloated, puffy, and my stomach makes me look pregnant thanks to fluid and medication. My face is very round, and I have no hair. My skin is beyond pale, and the most common comment I get right now is, "How are your lips so blue and yet you're still alive?" It's not pretty. Cancer isn't a pretty disease. It's fucking ugly. I know how I look right now. I know people look at me differently, and aren't as likely to comment on photos because there's not much to say unless I slather on make-up (which takes a lot of energy these days - and I need that energy to actually just breathe oxygen into my lungs). However, it's the little moments - when I'm holding James and Toby says, "That is beautiful," or I'm curled up in an ICU bed and my dear friend (after he's seen me get sick on myself) says, "You know, the person with this illness is still gorgeous," or a nurse says, "Your strength makes you glow" - those are the moments I believe, because no one would say them unless they absolutely wanted to. The possibility of imminent death makes people examine beauty in a different light.

And though I don't feel beautiful at ALL right now, that's how I make it through. Because it's more than the cane and the hair loss and the blue lips and the trembling hands and the constant fluid retention. It's about what people see beyond that, and that they care to tell me.

♥.

[alumiere.livejournal.com]

It depends on who says it and how. I get exasperated with fake sympathy and half compliments. I also get frustrated with being held up as an inspiration because I've figured out how to do something on my own.

OTOH I appreciate true compliments, and am especially happy when they come on days when I feel like crap. Then again, if I'm out when I feel bad I usually look okay - it helps my attitude to dress the part before I load up on pain meds.