An open letter to the deeply affronted "friendly and well meaning" people of the world
For the record, there's a really meaningful bit at the end of the sarcastic letter that is worth sticking around for ;)
Dear Saint Somebody,
Yes, I heard you ask me whether I was in a skiing accident. Ha, ha. You are so incredibly clever, you're certainly the first person to have ever asked me about the braces on my knee and ankle. I wasn't in a skiing accident, and I'm going to quietly tell you that and yes, I will then walk away. I just LOVE IT when you call after me that what really happened must have been so much more embarrassing and that's why I don't want to talk about it.
Do you hear me laughing?
That's because I'm not.
I was just trying to buy this tin of arnica salve. I know this one works really well where others haven't. What's arnica, you ask? It's a flower/herb that has anti-inflammatory properties. I use it on my inflamed red joints for inflammation and pain relief. Oh, don't worry, this lady over here in the supplements department would like to speak to me in a derogatory way for looking in the wrong aisle for this product then would like a personal medical history so she can recommend something else. She knows all about arnica, you know. People don't know it can be taken internally, you know. Oh, I know? Well some people don't know. She's NOT upset that I already have a product that I'm happy with and I'd just like to buy it, thank you very much. What a jerk I am for not getting her involved.
You know what's even funnier? When I bought two tins at another location earlier today (because it's so hard to find) and the cashier told me, laughing, I was TOO YOUNG to have joint problems. OH GUYS, let's call my rheumatologist. Maybe, between me and him, we can get this guy a gig at St. Jude's children's hospital. Kids with cancer LOVE that kind of comedy, right? You're TOO YOUNG TO BE SICK, GUYS! HA HA HA HA HA HA HA!!! OH, that kills.
... wait...
You know what I love? I love when you don't really treat me with respect in person, by say... not looking me in the eye, or pretending I'm not there because it's sort of this guilty uncomfortable feeling to address what my life's about but DON'T WORRY, GUYS. YOU'RE GONNA PRAY FOR ME. I love that. It totally makes my day. I'm pretty convinced that people who don't have the common decency to acknowledge my presence because I haven't explained to you the difficulties of my life and that's sort of uncomfortable because you feel guilty about it HAVE JUST A TON OF PULL with the the big man upstairs. Like, seriously, that's not really self-righteous and hypocritical at all. Thanks a million, guys.
Also, if you're a bank teller trying to chat me up, by all means, ask me weird interrogative questions about my knee brace and why I need quarters. When I get fed up and tell you I have a chronic degenerative pain disorder, feel free to pout and pity me.
Let me tell each and every one of you OH MY GOSH SO WELL INTENTIONED AND FRIENDLY PEOPLE how much I ADORE YOUR PITY. It's my favorite thing when someone who has no particular empathy or appreciation for my daily experience, nor respect for the way that I go about my life in a normal, every day human way of getting things done, tells me how terribly SORRY THEY ARE. Oh my gosh, you are like the the FIRST PERSON EVER to even mention that it makes you sad that I hurt sometimes. I mean, gosh, you're like an angel from heaven because it's probably not that you're deeply uncomfortable and feeling guilty and don't know what to say. And nothing you said or did was prodding or crossing a line of my privacy and harassing me for personal information to get to this point in the conversation. You mean SO well! You're just an innocent, sweet, pitying little angel.
Don't worry, I'm not standing here with my hip grinding against it's socket like the worn down teeth of an old gear against another while you feel uncomfortable. I actually came out into public to be pitied by you, that's why I'm here! Not to go about my life and accomplish things without everyone's feelings about my body interfering with my ability to get a roll of quarters and go do some laundry. And I'm definitely not bending to tie my shoe and feeling my spine and pelvis do the thudding click of the adjustment of an old office chair just so I can avoid a stranger's awkward sad expression after a whole bunch of harassment lending to a really severe invasion of privacy. Nope, not here! All's well with this girl, I'm here to field your emotional state about my body. Please comment, I get my kicks off of making my own personal space a forum for public commentary!
With love and admiration,
Shareeta
Okay, that was really snarky. On a more serious note, I am not upset that I have this yet undiagnosed whatever it is. I just really am beginning to appreciate what a wonderful friend shared with me one day, "The hardest thing about having a chronic illness is OTHER PEOPLE." I find the greatest difficulty in asking people to respect my space and privacy and having that request become a huge trigger point for offense. It does teach you who your real friends, are, though.
On a more positive note, the community that I have tapped into as I've discovered and validated my pain and medical concerns is amazing! I know such incredible people who go about their daily lives with such struggles that I can't even imagine. I have always been a rallying point for outcasts (and proud of it!) but this is a community that knows struggle, and humility, and most certainly, goodness. The empathy and compassion that being chronically ill (and in my case specifically, being invalidated in it on an ongoing basis) teaches you just makes you see what's really important in life... and death.
I have had a lot of truly beautiful experiences in life, most of them directly connected to or following something devastating, traumatic and difficult. This time, I am eager to find an answer to what I've been struggling with. This is a platform for change and for growth and for advocacy and for kindness. What a message that is!
So... please don't pity me! I know I was being sarcastic before and all, but I'm being very sincere now, please don't pity me! I'm really grateful for this life and this body, flaws and all, and I'm living it as fully as I can. Sometimes, for me, that means being stuck in bed. Or any other number of places I get stuck. Right now, it means I get to share my frustration (in good humor, I promise) in the middle of the night because my hips and shoulders just won't sit right and it's kind of making me cry. That happens to me, and you know what? Most of the time, I'm still pretty dang grateful for this life I lead. Sometimes it gets me down, and most of the time, I don't want to talk about it. Not because I'm shy or anything - but because I'm choosing to focus on the positive.
You'll know if I'm having a bad day. One of two things will happen. I will be attached to one or a couple of people and utterly ignore everyone else (I suppose you could take offense to this, but it's honestly just that I can't handle any more people and I don't want to recount my pain to the crew), or I will ask for your help. If I DO ask for your help, know first how much of an honor it is that I trust you enough to let you into that circle of my pain. You have a couple of options then. You can (1) sit with me in my pain, helping me shoulder the burden with solidarity and stoicism or you can always (2) let me know that you can't help right now (for whatever reason, I don't care and I don't need an excuse!). I know all about personal limits, and I want you to respect yours as much as you respect mine.
Okay, darlings, with REAL love and admiration,
Shareeta
Dear Saint Somebody,
Yes, I heard you ask me whether I was in a skiing accident. Ha, ha. You are so incredibly clever, you're certainly the first person to have ever asked me about the braces on my knee and ankle. I wasn't in a skiing accident, and I'm going to quietly tell you that and yes, I will then walk away. I just LOVE IT when you call after me that what really happened must have been so much more embarrassing and that's why I don't want to talk about it.
Do you hear me laughing?
That's because I'm not.
I was just trying to buy this tin of arnica salve. I know this one works really well where others haven't. What's arnica, you ask? It's a flower/herb that has anti-inflammatory properties. I use it on my inflamed red joints for inflammation and pain relief. Oh, don't worry, this lady over here in the supplements department would like to speak to me in a derogatory way for looking in the wrong aisle for this product then would like a personal medical history so she can recommend something else. She knows all about arnica, you know. People don't know it can be taken internally, you know. Oh, I know? Well some people don't know. She's NOT upset that I already have a product that I'm happy with and I'd just like to buy it, thank you very much. What a jerk I am for not getting her involved.
You know what's even funnier? When I bought two tins at another location earlier today (because it's so hard to find) and the cashier told me, laughing, I was TOO YOUNG to have joint problems. OH GUYS, let's call my rheumatologist. Maybe, between me and him, we can get this guy a gig at St. Jude's children's hospital. Kids with cancer LOVE that kind of comedy, right? You're TOO YOUNG TO BE SICK, GUYS! HA HA HA HA HA HA HA!!! OH, that kills.
... wait...
You know what I love? I love when you don't really treat me with respect in person, by say... not looking me in the eye, or pretending I'm not there because it's sort of this guilty uncomfortable feeling to address what my life's about but DON'T WORRY, GUYS. YOU'RE GONNA PRAY FOR ME. I love that. It totally makes my day. I'm pretty convinced that people who don't have the common decency to acknowledge my presence because I haven't explained to you the difficulties of my life and that's sort of uncomfortable because you feel guilty about it HAVE JUST A TON OF PULL with the the big man upstairs. Like, seriously, that's not really self-righteous and hypocritical at all. Thanks a million, guys.
Also, if you're a bank teller trying to chat me up, by all means, ask me weird interrogative questions about my knee brace and why I need quarters. When I get fed up and tell you I have a chronic degenerative pain disorder, feel free to pout and pity me.
Let me tell each and every one of you OH MY GOSH SO WELL INTENTIONED AND FRIENDLY PEOPLE how much I ADORE YOUR PITY. It's my favorite thing when someone who has no particular empathy or appreciation for my daily experience, nor respect for the way that I go about my life in a normal, every day human way of getting things done, tells me how terribly SORRY THEY ARE. Oh my gosh, you are like the the FIRST PERSON EVER to even mention that it makes you sad that I hurt sometimes. I mean, gosh, you're like an angel from heaven because it's probably not that you're deeply uncomfortable and feeling guilty and don't know what to say. And nothing you said or did was prodding or crossing a line of my privacy and harassing me for personal information to get to this point in the conversation. You mean SO well! You're just an innocent, sweet, pitying little angel.
Don't worry, I'm not standing here with my hip grinding against it's socket like the worn down teeth of an old gear against another while you feel uncomfortable. I actually came out into public to be pitied by you, that's why I'm here! Not to go about my life and accomplish things without everyone's feelings about my body interfering with my ability to get a roll of quarters and go do some laundry. And I'm definitely not bending to tie my shoe and feeling my spine and pelvis do the thudding click of the adjustment of an old office chair just so I can avoid a stranger's awkward sad expression after a whole bunch of harassment lending to a really severe invasion of privacy. Nope, not here! All's well with this girl, I'm here to field your emotional state about my body. Please comment, I get my kicks off of making my own personal space a forum for public commentary!
With love and admiration,
Shareeta
Okay, that was really snarky. On a more serious note, I am not upset that I have this yet undiagnosed whatever it is. I just really am beginning to appreciate what a wonderful friend shared with me one day, "The hardest thing about having a chronic illness is OTHER PEOPLE." I find the greatest difficulty in asking people to respect my space and privacy and having that request become a huge trigger point for offense. It does teach you who your real friends, are, though.
On a more positive note, the community that I have tapped into as I've discovered and validated my pain and medical concerns is amazing! I know such incredible people who go about their daily lives with such struggles that I can't even imagine. I have always been a rallying point for outcasts (and proud of it!) but this is a community that knows struggle, and humility, and most certainly, goodness. The empathy and compassion that being chronically ill (and in my case specifically, being invalidated in it on an ongoing basis) teaches you just makes you see what's really important in life... and death.
I have had a lot of truly beautiful experiences in life, most of them directly connected to or following something devastating, traumatic and difficult. This time, I am eager to find an answer to what I've been struggling with. This is a platform for change and for growth and for advocacy and for kindness. What a message that is!
So... please don't pity me! I know I was being sarcastic before and all, but I'm being very sincere now, please don't pity me! I'm really grateful for this life and this body, flaws and all, and I'm living it as fully as I can. Sometimes, for me, that means being stuck in bed. Or any other number of places I get stuck. Right now, it means I get to share my frustration (in good humor, I promise) in the middle of the night because my hips and shoulders just won't sit right and it's kind of making me cry. That happens to me, and you know what? Most of the time, I'm still pretty dang grateful for this life I lead. Sometimes it gets me down, and most of the time, I don't want to talk about it. Not because I'm shy or anything - but because I'm choosing to focus on the positive.
You'll know if I'm having a bad day. One of two things will happen. I will be attached to one or a couple of people and utterly ignore everyone else (I suppose you could take offense to this, but it's honestly just that I can't handle any more people and I don't want to recount my pain to the crew), or I will ask for your help. If I DO ask for your help, know first how much of an honor it is that I trust you enough to let you into that circle of my pain. You have a couple of options then. You can (1) sit with me in my pain, helping me shoulder the burden with solidarity and stoicism or you can always (2) let me know that you can't help right now (for whatever reason, I don't care and I don't need an excuse!). I know all about personal limits, and I want you to respect yours as much as you respect mine.
Okay, darlings, with REAL love and admiration,
Shareeta
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