Wednesday, January 31, 2018
Community - AIU conference
A memory from January 6th, 2015 popped up on my facebook feed:
"Hooked up for my stim test, sitting in the infusion center at Swedish, IM injection in, first draw in 5 min! Only 4 more hours of this...I'm told it won't make me feel bad for an hour or two, so here's hoping for no nausea and severe gh deficiency!"
"Hooked up for my stim test, sitting in the infusion center at Swedish, IM injection in, first draw in 5 min! Only 4 more hours of this...I'm told it won't make me feel bad for an hour or two, so here's hoping for no nausea and severe gh deficiency!"
Tuesday, January 30, 2018
Don't be an ass - Blame and Judgement
AIU's conference is coming up and Dr. Gillett is speaking on mental health. I've attended a number of his sessions at Magic Conventions the last few years, and often come away with some tidbit of knowledge, understanding, or even practical skill that has proven invaluable on my journey (Mindfulness breathing FTW!). Back in October a question was posed to attendees asking what would we like him to speak on...if there were any specific issues, etc, we would like addressed, and here is an edited portion of my response at that time:
"I'm currently thinking 'acceptance' is a big one for me, personally. In many ways we HAVE to accept our new normal to be able to cope with the day-to-day in realistic and healthy ways. Things go SO much better if I am realistic with myself about my limitations. Yet there are so many conflicting voices saying to accept your limitations = giving up. Another conflicting voice is the idea that expectation leads to disappointment. But I also can't seem to stop expecting more from myself and setting expectations that are too high. And it is even harder when that seems to be an ever-moving target (what I can do, how I will feel, and there isn't necessarily any pattern or warning involved to help me plan for that, either). I think I understand where both perspectives are coming from, but how do you reconcile all that?"
And, I left it there. I've never made any headway into understanding how to reconcile those opposing statements, where all seem true and appropriate at some level, and all are also passing judgement at some level. But it came up in an unexpected way today...A friend is learning healthy ways of coping with mental illness (I'd rather class it as "neuro-atypical" than "illness" but for clarity I'll leave it as it stands), and is working to overcome addictions she picked up (as unhealthy coping mechanisms for the same) and she has been writing her progress on a blog and sharing the links to facebook. A bit of encouragement for herself and others, sharing of learned understanding, some sharing of practical things that have helped her, of healthy habits she is choosing, and a bit of journaling. She posted today that someone told her she is "addicted" to facebook and being selfish and self-centered in doing so. I just do not have words. A total lack of empathy. If you don't want to see it, move along. YOU are being selfish and self-centered, Asshat! Anyway, my very hot feelings towards this unknown person aside, as I was responding to her (and the asshat's judgment), I shared some of my own experience and how healing/disease can make you appear selfish and obsessed to someone who cannot understand what is required in that situation. Then I realized I needed to take my own advice.
Some of what I shared is that I've come to learn you are judged as wrong no matter what. That people will blame you for your situation no matter what. I repeat, no matter what. Some infer it, with the pretense of kindness, and others will flat out tell you. Whether you fight to eradicate the disease, if you accept its limitations and focus on coping, or if you give into it...Others will always find a way to judge your actions as wrong, your choices as wrong, and to place the blame for having to even make those choices solely on you. I've been through enough of those iterations now to know that someone who judges and blames for one, suggesting you do another, will just switch to judging and blaming for the next as well. So really, that response is a given. I'm still shocked how commonplace and acceptable it is in our society to be so forthcoming with the blame and judgment. I KNOW it is also cliche to say you shouldn't let others' opinions affect your choices, but I didn't grow up that way. I actually grew up with every decision being criticized, being blamed for my own emotions, for others' actions, and then criticized for caring about criticism and being indecisive. So not caring what others think doesn't come naturally to me. I do care what people think of me, how they treat me, and what they say about and to me. I get hurt by it. But, the cliche still rings true. If you are going to be blamed and judged no matter what, then blame and judgement logically doesn't matter any more in the decision making process. In taking my own advice then, I should do what I feel is right for me, confident in the knowledge that that outcome will be the same. LOL The difference? Which choice can I live with? Which do I feel I can accomplish? Which option speaks to me? I don't do guilt well, so which “blame” can I live with and throw off as "false" most readily (that's an odd one, I'm actually too idealistic to decide based on that, but I wish I could!)? Some might say that is a pessimistic view. I'd say it is a realistic one. But, depending on how you look at it, it actually can bring more optimism into the decision-making process. Now it isn't about the nay-sayers; It's about the good, the positive.
So I am now taking my own advice and saying "To hell with all the blame!" and am putting myself out there, letting you know I am not physically doing so well. I'm trusting you with my truth; Please don't abuse it. I haven't been well for over a year now. I have avoided telling more than a few of those closest to me because I didn't want to go through all of the judgment and blame again. I didn't make that up before. It wasn't atypical, it was constant and overwhelming. I didn't "dwell on the negative" and refuse to forgive people's good intentions gone awry (as I was constantly told). I did my best to be kind and compassionate in response, to brush it off, to try to see *and feel* that they meant well, and to not let it get to me. But the reality is, when you most need support and are at your most vulnerable, it hurts to instead receive harm. DAMN does it hurt. You can't always be the strong one. You can't always ignore everything that comes your way. WHEN is it someone else's turn to be responsible for their judgment, words and actions? When I was least able to deal with it is when it was dumped upon me the most. I didn't need that then, I didn't this past year and a half, and I don't need it now. Elias was diagnosed with an increasingly debilitating and fatal illness last fall to boot. I just didn't have the energy to waste on rude comments about my health (on top of the ones about his diagnosis too, when I again needed support). Shutting off that part of my truth meant others couldn't even try to meet those needs, but it also saved me a lot of potential hurt at a time when I had no extra to give. It was kind of like a calculated risk at the time, but I didn't quite recognize I was making it, or at least that I had kept it up when it wasn't required for my coping anymore. I know putting it out there will mean more blame and judgement, and I don't want that at all. But I'm also more able to stand up for myself now, and to recognize emotional abuse and manipulation for what it is. If you make a habit of refusing to take responsibility for your actions, there will quickly come a point, perhaps without warning, where I will be done allowing it. I am not here to be a martyr for you to pummel. I have enough crap to deal with without having more thrown at me; I don't have the patience for it anymore.
For those who have read this and are still here. again, I thank you with my trust. As I said, the exhaustion and fatigue returned last Summer. I had had a miraculous healing (my thoughts about that then/now aside), and had been off my hormone replacement medications entirely for some time. I was able to move here to Missouri with 6 kids while my husband stayed behind in Alaska to finish his work season, complete the remodel on our house, and sell it. I had to cook, clean, shop, weed whack, plant, build a chicken coop, take care of a dog and goats, homeschool, etc all on my own. I wouldn't say I did it well, but I could do it. And then Summer hit. I was out pounding in fence posts, weed whacking, and hauling about 20 hay bales to make a garden (in one day), and I overheated. I drank fluids and gatorade the entire time I was outside and afterwards to replenish, but even so I crashed hard and it was a good week before I could function at all. Then my mother came to watch the kids while I attended the Magic Conference in Chicago again. Her visit was its own form of a major stressor. And while I was in Chicago, without warning, I had my first episode of acute adrenal insufficiency in a long time. So long I didn't even have medication with me. I was caught off-guard, and had friends not pointed out I was sick and getting worse, I may not have recognized all the warning signs. Someone helped me out with some saving medications, and I made it home safely. I decided to dig out my emergency kit from the moving boxes after all. I couldn't seem to go outside in the Missouri heat again without getting sick after that. And things slowly went downhill from there.
Now, I can't actually function much. I'm still way better than my early hypopit days. I don't *feel* so sick. I don't seem to have Cushing's. I'm still doing so much better emotionally (like a cloud was lifted back then and has remained gone), but the headaches were constant and I reluctantly resumed taking fludrocortisone again this Summer/fall (the salt-retaining hormone). It helped dramatically. But I felt like I had failed. Again. All those who blamed me for being sick would blame me again. All the "You're doing it wrong; It's your fault!" statements, even from people I KNEW loved me and wanted what was best for me, would come back again, this time with more ammunition...
Maybe I hadn't actually been healed before. Maybe I'd done something to no longer deserve it. Maybe I was faking being healed. Maybe I was faking being sick. Maybe it was all in my head. Maybe I had WILLED IT on myself (again). Maybe I LIKED being sick. Maybe I focused on being sick and it was self-fulfilling prophecy. I don't believe a SINGLE one of those statements. But each one has been made to me, sometimes countless times. I don't know why things happened this way. I did ask to be well. All the time. I don't honestly know why it worked that time. I didn't ask for the fatigue again. I didn't fake any of it. I wasn't even thinking about it. I certainly ENJOYED my newfound abilities, even if I still wasn't "healthy", still fat, still more fatigued, still had liver damage, still didn't handle stress well, etc. I could function. I loved being able to function. I loved having a farm and being able to go out and do things. I LOVED singing and dancing around with kids. I ASSUMED and acted on the belief that I was better, and I really was. I didn't look for it. I didn't ask for it. I wasn't waiting on baited breath for the other shoe to drop. I was fine...and then I wasn't. I didn't somehow displease God (What an awful God to believe in!). But I had been told that was why I was sick in the first place. Britton has suggested, that maybe my reprieve was a gift to allow us to move and start this new life. Again, maybe it was part of my "path" and not a "destination", which is a distinction I have missed many times before. Regardless of the how and why, clearly I have little input on what is.
I tried to fully eradicate the illnesses, and even while successful in doing so, I was blamed and judged. I have tried accepting it as my normal and focusing on coping, and in doing so I am judged and blamed. I even identified with it fully at one point, and was certainly blamed and judged then as well. So, it seems regardless of my choices, actions, and even my successes in them, I can't do anything to avoid the judgement and blame. If I knew how to fix it, I would. I've tried so many things, so many times. Traditional, unconventional, spiritual, energetic, take your pick. If it was as easy as "eating well" then I wouldn't have gotten sick in the first place. If it was as simple as "exercising" then the exercise wouldn't have nearly killed me. So, don't insult my intelligence, willingness to think outside the box, or determination...That won't fly either. I get it that few can relate to my full experience, I don't expect that. But we can all relate to someone being an ass, so don't be an ass.
"I'm currently thinking 'acceptance' is a big one for me, personally. In many ways we HAVE to accept our new normal to be able to cope with the day-to-day in realistic and healthy ways. Things go SO much better if I am realistic with myself about my limitations. Yet there are so many conflicting voices saying to accept your limitations = giving up. Another conflicting voice is the idea that expectation leads to disappointment. But I also can't seem to stop expecting more from myself and setting expectations that are too high. And it is even harder when that seems to be an ever-moving target (what I can do, how I will feel, and there isn't necessarily any pattern or warning involved to help me plan for that, either). I think I understand where both perspectives are coming from, but how do you reconcile all that?"
And, I left it there. I've never made any headway into understanding how to reconcile those opposing statements, where all seem true and appropriate at some level, and all are also passing judgement at some level. But it came up in an unexpected way today...A friend is learning healthy ways of coping with mental illness (I'd rather class it as "neuro-atypical" than "illness" but for clarity I'll leave it as it stands), and is working to overcome addictions she picked up (as unhealthy coping mechanisms for the same) and she has been writing her progress on a blog and sharing the links to facebook. A bit of encouragement for herself and others, sharing of learned understanding, some sharing of practical things that have helped her, of healthy habits she is choosing, and a bit of journaling. She posted today that someone told her she is "addicted" to facebook and being selfish and self-centered in doing so. I just do not have words. A total lack of empathy. If you don't want to see it, move along. YOU are being selfish and self-centered, Asshat! Anyway, my very hot feelings towards this unknown person aside, as I was responding to her (and the asshat's judgment), I shared some of my own experience and how healing/disease can make you appear selfish and obsessed to someone who cannot understand what is required in that situation. Then I realized I needed to take my own advice.
Some of what I shared is that I've come to learn you are judged as wrong no matter what. That people will blame you for your situation no matter what. I repeat, no matter what. Some infer it, with the pretense of kindness, and others will flat out tell you. Whether you fight to eradicate the disease, if you accept its limitations and focus on coping, or if you give into it...Others will always find a way to judge your actions as wrong, your choices as wrong, and to place the blame for having to even make those choices solely on you. I've been through enough of those iterations now to know that someone who judges and blames for one, suggesting you do another, will just switch to judging and blaming for the next as well. So really, that response is a given. I'm still shocked how commonplace and acceptable it is in our society to be so forthcoming with the blame and judgment. I KNOW it is also cliche to say you shouldn't let others' opinions affect your choices, but I didn't grow up that way. I actually grew up with every decision being criticized, being blamed for my own emotions, for others' actions, and then criticized for caring about criticism and being indecisive. So not caring what others think doesn't come naturally to me. I do care what people think of me, how they treat me, and what they say about and to me. I get hurt by it. But, the cliche still rings true. If you are going to be blamed and judged no matter what, then blame and judgement logically doesn't matter any more in the decision making process. In taking my own advice then, I should do what I feel is right for me, confident in the knowledge that that outcome will be the same. LOL The difference? Which choice can I live with? Which do I feel I can accomplish? Which option speaks to me? I don't do guilt well, so which “blame” can I live with and throw off as "false" most readily (that's an odd one, I'm actually too idealistic to decide based on that, but I wish I could!)? Some might say that is a pessimistic view. I'd say it is a realistic one. But, depending on how you look at it, it actually can bring more optimism into the decision-making process. Now it isn't about the nay-sayers; It's about the good, the positive.
So I am now taking my own advice and saying "To hell with all the blame!" and am putting myself out there, letting you know I am not physically doing so well. I'm trusting you with my truth; Please don't abuse it. I haven't been well for over a year now. I have avoided telling more than a few of those closest to me because I didn't want to go through all of the judgment and blame again. I didn't make that up before. It wasn't atypical, it was constant and overwhelming. I didn't "dwell on the negative" and refuse to forgive people's good intentions gone awry (as I was constantly told). I did my best to be kind and compassionate in response, to brush it off, to try to see *and feel* that they meant well, and to not let it get to me. But the reality is, when you most need support and are at your most vulnerable, it hurts to instead receive harm. DAMN does it hurt. You can't always be the strong one. You can't always ignore everything that comes your way. WHEN is it someone else's turn to be responsible for their judgment, words and actions? When I was least able to deal with it is when it was dumped upon me the most. I didn't need that then, I didn't this past year and a half, and I don't need it now. Elias was diagnosed with an increasingly debilitating and fatal illness last fall to boot. I just didn't have the energy to waste on rude comments about my health (on top of the ones about his diagnosis too, when I again needed support). Shutting off that part of my truth meant others couldn't even try to meet those needs, but it also saved me a lot of potential hurt at a time when I had no extra to give. It was kind of like a calculated risk at the time, but I didn't quite recognize I was making it, or at least that I had kept it up when it wasn't required for my coping anymore. I know putting it out there will mean more blame and judgement, and I don't want that at all. But I'm also more able to stand up for myself now, and to recognize emotional abuse and manipulation for what it is. If you make a habit of refusing to take responsibility for your actions, there will quickly come a point, perhaps without warning, where I will be done allowing it. I am not here to be a martyr for you to pummel. I have enough crap to deal with without having more thrown at me; I don't have the patience for it anymore.
For those who have read this and are still here. again, I thank you with my trust. As I said, the exhaustion and fatigue returned last Summer. I had had a miraculous healing (my thoughts about that then/now aside), and had been off my hormone replacement medications entirely for some time. I was able to move here to Missouri with 6 kids while my husband stayed behind in Alaska to finish his work season, complete the remodel on our house, and sell it. I had to cook, clean, shop, weed whack, plant, build a chicken coop, take care of a dog and goats, homeschool, etc all on my own. I wouldn't say I did it well, but I could do it. And then Summer hit. I was out pounding in fence posts, weed whacking, and hauling about 20 hay bales to make a garden (in one day), and I overheated. I drank fluids and gatorade the entire time I was outside and afterwards to replenish, but even so I crashed hard and it was a good week before I could function at all. Then my mother came to watch the kids while I attended the Magic Conference in Chicago again. Her visit was its own form of a major stressor. And while I was in Chicago, without warning, I had my first episode of acute adrenal insufficiency in a long time. So long I didn't even have medication with me. I was caught off-guard, and had friends not pointed out I was sick and getting worse, I may not have recognized all the warning signs. Someone helped me out with some saving medications, and I made it home safely. I decided to dig out my emergency kit from the moving boxes after all. I couldn't seem to go outside in the Missouri heat again without getting sick after that. And things slowly went downhill from there.
Now, I can't actually function much. I'm still way better than my early hypopit days. I don't *feel* so sick. I don't seem to have Cushing's. I'm still doing so much better emotionally (like a cloud was lifted back then and has remained gone), but the headaches were constant and I reluctantly resumed taking fludrocortisone again this Summer/fall (the salt-retaining hormone). It helped dramatically. But I felt like I had failed. Again. All those who blamed me for being sick would blame me again. All the "You're doing it wrong; It's your fault!" statements, even from people I KNEW loved me and wanted what was best for me, would come back again, this time with more ammunition...
Maybe I hadn't actually been healed before. Maybe I'd done something to no longer deserve it. Maybe I was faking being healed. Maybe I was faking being sick. Maybe it was all in my head. Maybe I had WILLED IT on myself (again). Maybe I LIKED being sick. Maybe I focused on being sick and it was self-fulfilling prophecy. I don't believe a SINGLE one of those statements. But each one has been made to me, sometimes countless times. I don't know why things happened this way. I did ask to be well. All the time. I don't honestly know why it worked that time. I didn't ask for the fatigue again. I didn't fake any of it. I wasn't even thinking about it. I certainly ENJOYED my newfound abilities, even if I still wasn't "healthy", still fat, still more fatigued, still had liver damage, still didn't handle stress well, etc. I could function. I loved being able to function. I loved having a farm and being able to go out and do things. I LOVED singing and dancing around with kids. I ASSUMED and acted on the belief that I was better, and I really was. I didn't look for it. I didn't ask for it. I wasn't waiting on baited breath for the other shoe to drop. I was fine...and then I wasn't. I didn't somehow displease God (What an awful God to believe in!). But I had been told that was why I was sick in the first place. Britton has suggested, that maybe my reprieve was a gift to allow us to move and start this new life. Again, maybe it was part of my "path" and not a "destination", which is a distinction I have missed many times before. Regardless of the how and why, clearly I have little input on what is.
I tried to fully eradicate the illnesses, and even while successful in doing so, I was blamed and judged. I have tried accepting it as my normal and focusing on coping, and in doing so I am judged and blamed. I even identified with it fully at one point, and was certainly blamed and judged then as well. So, it seems regardless of my choices, actions, and even my successes in them, I can't do anything to avoid the judgement and blame. If I knew how to fix it, I would. I've tried so many things, so many times. Traditional, unconventional, spiritual, energetic, take your pick. If it was as easy as "eating well" then I wouldn't have gotten sick in the first place. If it was as simple as "exercising" then the exercise wouldn't have nearly killed me. So, don't insult my intelligence, willingness to think outside the box, or determination...That won't fly either. I get it that few can relate to my full experience, I don't expect that. But we can all relate to someone being an ass, so don't be an ass.
The wrong end of the privilege stick.
There are some things society gives a green light to attack, and unless you’ve been in one of those positions yourself, you typically won’t see how constant and widespread that behavior is. It should not be normal, and when you bring it up, you get treated as if YOU are still to blame and still worthy of judgment. You must be focusing on the few negatives and ignoring the positives, you’re looking for offense, you clearly can’t accept that people don’t understand but mean well, you should be able to ignore it all, or you’re attention-seeking and making it sound more dramatic than it really is.
Living with Cushing’s Disease, it sincerely was the norm and not the exception, and I hated it. Sure it made me stronger, but I wanted kindness, help and support, not a constant barrage of open judgment and blame. I spent so much time and effort trying to educate the people who reacted that way.
But it didn’t work. Those who judged in ignorance still judged in knowledge (if they gained any). Being diagnosed with “the most morbid of diseases” by a world-renowned specialist didn’t change their minds. Having brain surgery didn’t change anything. Brain surgery! They didn’t care. And you know what? Those golden gems who cared and treated me like a human being all along? They still treated me with kindness and respect.
I have this bad habit of mistaking the path for the destination, and that is exactly what I was doing. Educating the judgement away didn’t work, but I don’t regret having tried at all —so many other worthwhile things came from making that effort. I was able to work through and release some of the emotions that came with the negativity I endured. I helped a large number of people struggling along side me. Those golden gems in my life who wanted to understand and help now had a means of better learning how to do so. Most importantly, I let others know they weren’t alone and that I understood, and they let me know the same. Being open and real about the pain and struggles is so cleansing for me; getting it all out really does seem to make room for healing.
Today I received a PM from someone I’d never met or spoken to before, desperate for help getting a diagnosis and treatment for Cushing’s (this time a parent with a sick child). For years this was a daily ,even thrice daily or more, occurrence for me. I was extremely active in the Cushing’s facebook groups as I navigated my own journey of diagnosis, treatment, and recovery.
The process can be intense, relentless, and heartbreaking, spanning years of our lives. For many treatment means trading an untreatable and deadly disease for one that is more manageable, so the intensity lessens but the struggle doesn’t cease.
As our conversation today was coming to an end, this person shared with me some of their pain at seeking help and receiving instead that same judgment and blame. Because what we generally receive from those around us (family, friends, doctors, even strangers) is judgement and blame, these friendships and facebook groups become our safe haven. These people get it. They understand. It is SO uncommon and such a relief. We commiserate but also help uplift and support so we can all gain better outcomes. We’ve figuratively AND literally saved lives, and had ours saved in turn.
*Something I wrote on Facebook Jan 8th, 2018
*Something I wrote on Facebook Jan 8th, 2018
Subscribe to:
Posts (Atom)