Coupon codes
Satva: FRIEND-W5NKDQS (Good until May 15th, 2019)
Pact: http://fbuy.me/iAufr
Dear organic and natural clothing companies,
First of all, recycled polyester is not organic or natural. It's not even sustainable. Plastic sustains until the end of time, but it breaks down to forms we can't use anymore, washes out of our clothes as micro plastics and gets into the water, then ends up in the fish we eat, so then it ends up in us and causes estrogen hormone disruption. Please stop treating recycled polyester as an organic fabric addition - it isn't!
Should I even get into the problem how many us with sensitivities cannot tolerate polyester on our skin? The reason I wear organic is to get away from the added chemicals and synthetic fabrics that my skin doesn't like. Polyester gives me horrendously awful body odor with a rash. It's so bad I gag myself on the body odor. My skin gets super tender and uncomfortable to touch, and then slimy too. My skin does its best to get polyester away from it.
Pact, I'm looking at you more than any other brand I'm frustrated with, mostly because I've loved you for years. You used to never use polyester at all, now you have way too many options with polyester. Most of your men's line contains polyester. Why? Why would you exclude men from having 100% organic cotton options like you do in your women's line? There are natural textile alternatives you should be using, especially considering your slogan, "Make organic an unnecessary adjective." Polyester doesn't fit that slogan at all.
Second, stop assuming all of your customers do yoga or are athletic. Some of us don't have the bodies we want for whatever perfectly valid and politically correct reason, and we don't really want to show off our butts and stomachs in overly fitted clothes. I have endometriosis, which causes me to bloat badly. I'd rather not call attention to my bloat with tight or overly fitted clothes. Some brands have gone the opposite extreme of making oversized baggy options. I don't want to look like a potato sack either! I have no problem with you offering plenty of athletic skin tight options for those with the bodies or desire to wear it, but please remember the average person wants their clothes to flatter them, not show off their flaws. Would it be possible to buy a pair of sweat pants with a bootcut and a thick enough and just loose enough fabric that doesn't show off every dimple in the butt? A pair of pants without any of that recycled polyester crap? Why not replace it with hemp or tencel or bamboo? Because I've been actively looking for that pair of pants for years. Maggie's has done the best job so far with this pant (due to the thickness, and can be sized up for a more relaxed and just as secure fit), but the length is too long and the hem is very difficult redo myself.
Third, I'm all for being fashionable... but why does that have to mean making so many options that show cleavage? Do you know how hard it is to find an organic cotton short sleeve tunic/ shirt tail cut that actually covers my butt (from the tight yoga pants your forced me to buy because there are not other options) without a super low cut neck line? Well you should know since you make the clothes! Maybe the super low necklines don't matter so much for the A and B cup ladies who can find an organic fabric sports bra to fit them, like on your models. But for the rest of us with average or large busts... could we please have modesty?
Let me take this point even further. We all have different bodies, but every band seems to be catering to the same body type. Most tunic center back lengths are around 27". (I know because I've spent hours researching the length on every organic tunic I can find.) I have a long torso and short legs, so I need a 30" center back length for the tunic to actually look like a tunic on me. 31" would be awesome too. I would wear tunics/ high-low hems if only I could find one that's long enough!
Speaking of men's issues, please stop with this snug shoulder width problem. If XL fits everywhere else just right, why are the shoulders always too tight? Because of the "modern fit" and "slim fit" issue. I don't need it to be slim in the shoulders! It's nice not have to excess fabric hanging off in the back, but why does that automatically mean as tight as possible in the shoulders?
Fourth, bras. Seriously, why in the world hasn't any brand filled this need!? I'm ready to fundraise money so I can start making brass myself. MANY women are 29 DD+ in size. I'm a 34DDD. It's impossible to find any sports bra made from natural fibers that actually fits us larger busted women. I've settled on this t-shirt Natori bra made from modal. There is no polyester that gives me skin irritation, and it fits well. But it's seriously the ONLY bra I've been able to find that works for me... and it's not a natural or organic fiber bra. Modal is borderline natural and my skin tolerates it, so good enough. But what about sports bras? Nope. Can't find any options. There are brands making great options if you're humble-size chested. Tasc, Boody, and Pact make great bras without polyester added. But none of them are designed for anyone over a D cup. Please, for the love of comfort and dignity, one of you brands cater to the rest of us ladies!
Fifth, stop making most of your pants as short ankle pants or long 32" inseams. In fact, can we move towards the way men's pants are sized (well, in conventional fabric pants)? I would love to be able to choose my waste size and inseam. If I'm going to spend $80 on a pair of pants, I shouldn't have to hem it or limit what shoes and socks I wear with it due to being short. Women come in all shapes and sizes, and the S, M, L, XL sizes with no choice of inseam is awful. Even the petite, regular, and long choices have too big of a difference between them! I was looking at pants that came in 28", 31", and 34". Um... too short and too long! Where is my 29.5 to 30" option?
My husband has a couple fit issues too. He has short legs, and needs a 29" inseam. 30" is too long and requires hemming or rolling up, but there are no organic pant options in a 29" inseam! In fact, men's organic pants have a *major* issue with not actually offering different inseam lengths. Most brands only offer their pants in 32" inseam lengths... way too long!
Lastly, color choices and patterns... are rare! If I wanted all of my shirts, pants, and dresses to be solid black then I'd be happy. Black looks bad on me. My skin is pale and my hair is brown - black washes me out. I want color! I want green, purple, blue, salmon, magenta, dark orange, violet... and I want them in prints or patterns! Almost all of the tops I own are solid colors because that's all that was offered, and they're mostly blue, because blue is the main color being offered (that isn't black or white.) Sigh. Try looking for a green 100% organic cotton t-shirt. Last I checked, Pact was the only brand offering it - and they didn't offer it for a long time. Try finding a green 100% organic 3/4th sleeve high-low/ shirt tail hem with a modest boat neck. It doesn't exist anywhere, I looked. All I'm asking for are options, please. Stop trying to be so basic all the time.
I want to commend some brands that are getting it right. Sometimes. Or mostly. Or good enough. Better than everyone else, at least?
Toad and Co's Earthworks Pants. Organic cotton with tencel, under $100 SRP, and you can find it at clearance prices. Tencel (from the eucalyptus tree) does what polyester does: prevents the wrinkles and helps with drape. Without destroying our water or hormones. Awesome! I know there have been some concern about the chemicals required to turn it into a textile, but I'm sensitive and have had no issues with the tencel in this brand. They have a bit of issue with size consistency. I own three of these pants and they fit differently. One is a skinny ankle pant, the other is full length and straight cut, and the other is full length and practically boot cut. I ordered the exact same style each time, I didn't go for the skinny or wide leg options. Hmm.
Toad and Co is also the best company for finding organic options with prints and designs. They do offer a lot of synthetic options too, so you have to be careful and read the fabric composition. They tend to be a little too expensive, but their clothes often end up on liquidation sites likes Sierra Trading Post and Camp Saver. Amazon sells many of their clothes, but not all, and often not at the lowest clearance price.
Pact Organic (in general). They have gone through too many big changes over the years, but I can usually (not always) rely on them for affordable enough well made basics. They make clothes the right way: small batches. When they come out with a new style, you better buy it quickly if you like it. They do offer amazing clearance sales, but that one shirt you loved may sell out before it reaches clearance. I normally just shop their sales, but I have occasionally splurged on a full price item just to make sure I get it.
They have done a really good job with the cut and fit of their clothes, and I'm never guessing about which size to order. Their underwear is all I wear - it's the best! It fits my wide hip size, doesn't ride up, doesn't sag, doesn't curl, doesn't wear out quickly... it's just perfect. Ironically, they offer lots of prints and patterns for underwear, but no longer do on their t-shirts. (Pact, if you read this, I miss your prints on your outerwear clothes!)
Gramicci's hemp and cotton mix tops. Simply awesome. The fabric is very lightweight and breathable, but not sheer or flimsy. It holds shape very well. I do have one hemp/cotton long sleeve shirt from them that is thicker than their summer options. Hemp is an amazing textile, much sturdier and less stretchy than cotton, also tends to be more breathable. My complaint with the brand is that their medium tends to be a little too snug, and their large tends to be a little too large. You will need to be careful with sizing.
I've tried several of Gramicci's pants, and I've returned most of them. They're very well made, but they are all cut for the same body shape that I don't have. They tend to be straight from the waist all the way down, and that doesn't work for me. I'm too curvy. I kept one of their pants that's a super skinny ankle pant that built in room for my wide hips, and they're a deep purple color. I paid $10 for them on clearance, so it's ok that I won't wear them too often.
PrAna's organic cotton tops. PrAna is a sustainable, fair trade brand (they are B Corp), but their focus is not on avoiding synthetic fibers. All of the cotton they use is organic, but most of the time it is mixed with polyester. This is because they're an athletic brand and they're focusing on moisture wicking properties. That said, their non-synthetic options tend to be fantastic. They are a very high quality brand, and their clearance prices are reasonable. I can't link to any specific shirt on their website because they update very frequently, but you can search by the fabric content. Such an amazing search feature! Check out their sale section - it tends to be full of a wide variety of options.
I have a hard time recommending PrAna's pants, though. I'm always between sizes, so they're either too big or too small. Some of the ones that have fit me have been too stiff. The quality is so high that it's hard to move in them. Recently most of their pants have moved towards being a cotton and polyester mix, or nylon. They occasionally come out with a natural fabric pant. I have their Avril Hiking Pant, which is all organic cotton with a little spandex. The band is stretchy, not a button close, so they're actually comfortable for most situations. The inseam was incredibly long and I had to hem them, which took some skill to do because the bottom has an elastic draw cord. The problem is that they are hiking pants, meaning they look like outdoor adventure gear and not normal casual pants. I tried on their new Soledad pant last week - I was so excited by the drawcord waist and the non-synethic fabric. I ended up hating it - billowy around the thighs, too tight at the ankle. They advertise it as if you should roll up the cuffs as a style choice, and I was able to, but it was tight.
Tasc Performance. Careful, some of their older styles use polyester and nylon. But they have a big line of a blend of organic viscose (bamboo) with organic cotton. Bamboo is the best anti-odor moisture wicking fabric - it can be made naturally (Tasc does it the best possible way), and it's superior to polyester's abilities.
Look at their St. Charle's collection. It's all made from this fabric, and they have a wide variety of options. Yes, it's all athletic gear, but much of it can be worn in any situation. Their goal is to eliminate the problem of needing different clothes for different situations. It's very high quality, so it might be out of your price range, and their sale prices are not always good enough.
I wear their TFFN sports bra. It's too small, but it fits better than any other organic sports bra on the market. I sweat a lot and this bra is amazing at keeping my skin breathing.
Honorable mentions:
Maggie's Organics. They have a few good options, but overall their sizing is really difficult to work with. Their colors tend to be bland too. They're worth giving a try to see if their clothes will work for you. You'll have the best luck if you're slender. The few articles of clothing I own from them have lasted for years and still look new, so the price is worth it. These are not fast fashion clothes designed to be thrown out after a season.
Fisher's Finery. Like Tasc, they use a mix of organic cotton and organic bamboo, as well as some silk options. The quality is very high, and their clothes are very comfortable. The problem is that they stick to skin-tight pants. They are all essentially leggings and yoga pants, even their business dress pants. This style does not flatter my butt and thighs, so I avoid it in public or without a tunic or dress. The pants and leggings are ridiculously overly comfortable though - it's better than not wearing pants at all. They compress slightly, have a silky texture, thick enough for warmth and modesty, and are not tight anywhere.
Satva. They occasionally have a really good option, but most of the time they're just not for me. They're mostly yoga clothes.
They make organic cotton work out tops with built in bras that I want so badly to like, but they just don't fit. I bought one in large (I'm typically a medium, but I have a large bust). The top is very tight around my stomach, but too big in the bust. It makes zero sense! The shelf bra band is only in the front, sewn into the sides. There is no supporting for the band from the back. The band is too big, so I get zero support whatsoever... but meanwhile you can see the shape of my belly button because it's so tight.
Other brands worth looking at, but I don't have enough luck with:
Woolrich - clothes tend to be boxy and stiff, only some organic options.
Patagonia - I have a lot of respect for the brand paying to research how polyester fibers wash away into our water! They do offer some organic options, but they still focus way too much on polyester... despite the results of their study. They try to educate on how to be responsible with polyester, but I don't think that's the responsible answer. Polyester is the problem, just stop using it. That's my opinion.
Columbia - just like Patagonia, they're an outdoor company that offers some organic cotton and hemp options. When they do offer it, the options tend to be really attractive and unique (a good unique.)
Showing posts with label open letter. Show all posts
Showing posts with label open letter. Show all posts
Saturday, April 13, 2019
Wednesday, November 7, 2018
Ableism
This post is not directed at anyone personally, it's actually inspired by a different blog I just read. I wanted to share my point of view on the topic. Some might think it's directed at them given how much I've struggled this week, but I promise it's not directed at anyone.
I want to talk about this other "-ism." The one that the media, "tolerant" people, and society in general doesn't talk about very often.
I want to talk about this other "-ism." The one that the media, "tolerant" people, and society in general doesn't talk about very often.
"Ableism"
Ableism is a concept like sexism, but in the case of ableism, it's an idea that disabled people can do what able bodied people can do. It seems obvious: a disabled person is not able to do everything a healthy able bodied person is able to do. It's obvious when you see someone with a broken leg. You would automatically understand that that person cannot run a 10k, because running requires both legs to be working properly. It is not obvious, however, in the case of people disabled by invisible illnesses. Do you assume that a person is fully able bodied just because you don't see obvious signs of disability, such a broken bones?
Ableism is a perspective rooted in misunderstanding, a lack of empathy, and often times just simply naivety. I'm not using the word ignorance here, because being ignorant implies that a person chooses to ignore the facts and wisdom about something. Ableism typically is not rooted in ignorance, because it's typically rooted in people who have never been presented with facts and wisdom to be able to ignore it. Ableism is due to a lack of advocacy and communication.
I normally get annoyed by the "-ism" talk, as I find that it's often over simplified as a means to be negative about someone or something. In the case of "ableism," however, I'm annoyed by the lack of talk about it at all! So I want to discuss my point of view on it.
I am disabled, but it's not obvious. My illnesses are not always invisible, but I don't let you see me when they are visible. When you do see me, it's because I have enough control over my body to act like a normal healthy person. This probably creates an assumption that I am actually healthy enough to do what any other healthy person can do.
You may assume that just because I occasionally drive a car that I can always drive a car. On the contrary, I often choose not to drive my car and will cancel my plans to avoid driving. If I drive when I'm not feeling capable it could be life threatening to myself and others. When I'm fatigued and weak my reaction time is very slow, both physically and mentally. When I'm fighting dizziness or vertigo it would be like drunk driving. When I'm in a pain flare I would be too distracted to focus on the road. The reality is that I don't drive very often, and when I do, I've prepped myself with my supplements, the right meal, and enough sleep first.
You may assume that just because you see me on my feet running around at work or the grocery store that I'm always able to be on my feet running around whenever I want to. Just like with my ability to drive, I have to prepare myself for these occasions with the right supplements and food first. I only work part time because I'm not capable of keeping my body in a state where I can be on my feet running around more than part time. I have to make choices, such as if I go to that outdoor autumn festival today, will I have the ability to work my shift tomorrow?
You may assume that just because I occasionally lift weights for exercise that I could do a graded exercise program to get better at lifting weights over time. Except every time I try to improve at some form of physical fitness my chronic fatigue gets worse. I only do what I feel I'm able to as I'm able to. I try to do enough exercise to burn off the high protein diet I eat, but not so much that it drains my strength for more important things, like going to work. Most importantly, just because one day I do 2 sets of 10 reps on my weight machine one day, does not mean I'll be able to carry that 25 pound box from FedEx up my stairs the next day. My strength ebbs and flows, it's not constant or predictable. My ability or inability to exercise in any given moment also determines how well I function in general.
You may assume that just because you see me in public talking to people like it's no problem, does not mean I'm able to talk on the phone at home any time. I can't tell you how many people have suggested I also work from home at an "easy" job like taking McDonald's orders over the phone. Do you realize how much energy talking takes? Especially in a fast paced job? It's difficult for me to keep up mentally, I start to stutter, sometimes my voice goes out on me, my voice gets rough and growls, I say the wrong words without realizing it, I can't say the words I'm reading because my brain won't translate what my eyes sees to my mouth... talking is like a sport to me! It's exhausting! Again, talking is a skill I reserve for times when I need to.
You may assume that because I'm a human being and I need to eat food to survive, that I should be able to order take out so that I can eat when I'm feeling too weak to cook for myself. Sorry, nope. I have yet to find a single restaurant in all of the city I live in that serves a dish I can safely eat for a price that I can afford. I'm not going to pay $40 for a 6 oz grass fed steak from a place that normally butters their steaks. I seem to be allergic to dairy, and I've learned that telling a server about my allergies doesn't mean my meal will be allergen free. Chefs make mistakes very often, or they simply don't know that an ingredient they always use would contain the food I'm allergic to. I MUST reserve enough energy to prepare my own food - this is a necessity for me. There's no other option. I can't live on convenience anymore, sadly, even though I need convenience more now than ever due to my fatigue.
You may assume that I can stand up as needed, such as during church or during the Pledge of Allegiance. I have a condition called POTS. I think it's fairly mild compared to many other people I've talked to with POTS, but 2 doctors have told me I have it. It means that when I go from sitting to standing that I experience pre-syncope - the feeling that I'm going to faint. My vision gets weak, sometimes black, I get very dizzy, I see random colors spinning around me, I can forget to breathe, my stomach and bladder sink, and I feel like I need to collapse. I'm not prone to fainting, so I often will stand up and deal with feeling all of these symptoms until my body finally adjusts and I stabilize. But what if that time is the one time I do faint and I hit my head on something on the way down? You can't see everything I feel when I stand up, but I experience it almost every time. I do my best when I slowly stand up, then stay on my feet and moving. I can't stay standing in one spot long, I must keep my circulation up.
You may assume that I can manage my periods just like any other woman has to manage them. Except that not many women have endometriosis, POTS, chronic pain, and chronic fatigue like me. There is no cure for endometriosis. There's hardly even ways to manage it. There's no cure for POTS, and no official FDA approved drug to treat it. When you put endometriosis and POTS together, you get this disastrous combination of extreme pain with extreme weakness. PMS can mean exhaustion to the point of being out of breath just trying to get to the bathroom. The period itself can mean I'm so dizzy that everything spins around me while I'm laying in bed with my eyes closed. Not to mention all the other symptoms. For about 12 years now I've been completely incapable of doing anything other than laying in bed and sitting on the toilet for the first day of my period. Surgery didn't help. At all. Healthy women with a normal period and some "normal" cramping can take a pain killer (if they even need it) and go on with their day like they're just a little extra tired. That sounds like a miracle to me. For years I took 12 ibuprofen on the first day of my period to manage the pain. It wasn't enough, but nothing else I tried worked better.
You may assume that just because my hair is clean that it wasn't a struggle to wash it. 50% of the time I shower I'm sitting on the floor of the shower while I wash. It's because it's exhausting to hold my arms up and stand up at the same time. My heart rate skyrockets and I get out of breath. I always wait to shower until times when I'm feeling strong enough. When I have to shower, but I'm not feeling strong enough, I'll often choose to not wash my hair and go out with dirty hair.
I could go on with many many more examples of how I'm not able-bodied. My disability judge and a few doctors agree. (Yes, I won my disability case after 3.5 years - but more on that some other time.) I'm disabled in many ways. But I look healthy. I do my make up, put decent clothes on, wash my hair, don't wear any casts or medical devices, I avoid engaging with people when I'm struggling cognitively... odds are, I won't give you much reason to assume I'm disabled when you actually do see me in public.
What do I need from you? Why do you need to understand all of this?
I need you to believe me. If I say no, I'm not capable. If I say no, I'm not up to it. If I ask you for help, please help. Don't argue. Just believe me. Don't shame me. Just trust me.
Ableism is a concept like sexism, but in the case of ableism, it's an idea that disabled people can do what able bodied people can do. It seems obvious: a disabled person is not able to do everything a healthy able bodied person is able to do. It's obvious when you see someone with a broken leg. You would automatically understand that that person cannot run a 10k, because running requires both legs to be working properly. It is not obvious, however, in the case of people disabled by invisible illnesses. Do you assume that a person is fully able bodied just because you don't see obvious signs of disability, such a broken bones?
Ableism is a perspective rooted in misunderstanding, a lack of empathy, and often times just simply naivety. I'm not using the word ignorance here, because being ignorant implies that a person chooses to ignore the facts and wisdom about something. Ableism typically is not rooted in ignorance, because it's typically rooted in people who have never been presented with facts and wisdom to be able to ignore it. Ableism is due to a lack of advocacy and communication.
I normally get annoyed by the "-ism" talk, as I find that it's often over simplified as a means to be negative about someone or something. In the case of "ableism," however, I'm annoyed by the lack of talk about it at all! So I want to discuss my point of view on it.
I am disabled, but it's not obvious. My illnesses are not always invisible, but I don't let you see me when they are visible. When you do see me, it's because I have enough control over my body to act like a normal healthy person. This probably creates an assumption that I am actually healthy enough to do what any other healthy person can do.
You may assume that just because I occasionally drive a car that I can always drive a car. On the contrary, I often choose not to drive my car and will cancel my plans to avoid driving. If I drive when I'm not feeling capable it could be life threatening to myself and others. When I'm fatigued and weak my reaction time is very slow, both physically and mentally. When I'm fighting dizziness or vertigo it would be like drunk driving. When I'm in a pain flare I would be too distracted to focus on the road. The reality is that I don't drive very often, and when I do, I've prepped myself with my supplements, the right meal, and enough sleep first.
You may assume that just because you see me on my feet running around at work or the grocery store that I'm always able to be on my feet running around whenever I want to. Just like with my ability to drive, I have to prepare myself for these occasions with the right supplements and food first. I only work part time because I'm not capable of keeping my body in a state where I can be on my feet running around more than part time. I have to make choices, such as if I go to that outdoor autumn festival today, will I have the ability to work my shift tomorrow?
You may assume that just because I occasionally lift weights for exercise that I could do a graded exercise program to get better at lifting weights over time. Except every time I try to improve at some form of physical fitness my chronic fatigue gets worse. I only do what I feel I'm able to as I'm able to. I try to do enough exercise to burn off the high protein diet I eat, but not so much that it drains my strength for more important things, like going to work. Most importantly, just because one day I do 2 sets of 10 reps on my weight machine one day, does not mean I'll be able to carry that 25 pound box from FedEx up my stairs the next day. My strength ebbs and flows, it's not constant or predictable. My ability or inability to exercise in any given moment also determines how well I function in general.
You may assume that just because you see me in public talking to people like it's no problem, does not mean I'm able to talk on the phone at home any time. I can't tell you how many people have suggested I also work from home at an "easy" job like taking McDonald's orders over the phone. Do you realize how much energy talking takes? Especially in a fast paced job? It's difficult for me to keep up mentally, I start to stutter, sometimes my voice goes out on me, my voice gets rough and growls, I say the wrong words without realizing it, I can't say the words I'm reading because my brain won't translate what my eyes sees to my mouth... talking is like a sport to me! It's exhausting! Again, talking is a skill I reserve for times when I need to.
You may assume that because I'm a human being and I need to eat food to survive, that I should be able to order take out so that I can eat when I'm feeling too weak to cook for myself. Sorry, nope. I have yet to find a single restaurant in all of the city I live in that serves a dish I can safely eat for a price that I can afford. I'm not going to pay $40 for a 6 oz grass fed steak from a place that normally butters their steaks. I seem to be allergic to dairy, and I've learned that telling a server about my allergies doesn't mean my meal will be allergen free. Chefs make mistakes very often, or they simply don't know that an ingredient they always use would contain the food I'm allergic to. I MUST reserve enough energy to prepare my own food - this is a necessity for me. There's no other option. I can't live on convenience anymore, sadly, even though I need convenience more now than ever due to my fatigue.
You may assume that I can stand up as needed, such as during church or during the Pledge of Allegiance. I have a condition called POTS. I think it's fairly mild compared to many other people I've talked to with POTS, but 2 doctors have told me I have it. It means that when I go from sitting to standing that I experience pre-syncope - the feeling that I'm going to faint. My vision gets weak, sometimes black, I get very dizzy, I see random colors spinning around me, I can forget to breathe, my stomach and bladder sink, and I feel like I need to collapse. I'm not prone to fainting, so I often will stand up and deal with feeling all of these symptoms until my body finally adjusts and I stabilize. But what if that time is the one time I do faint and I hit my head on something on the way down? You can't see everything I feel when I stand up, but I experience it almost every time. I do my best when I slowly stand up, then stay on my feet and moving. I can't stay standing in one spot long, I must keep my circulation up.
You may assume that I can manage my periods just like any other woman has to manage them. Except that not many women have endometriosis, POTS, chronic pain, and chronic fatigue like me. There is no cure for endometriosis. There's hardly even ways to manage it. There's no cure for POTS, and no official FDA approved drug to treat it. When you put endometriosis and POTS together, you get this disastrous combination of extreme pain with extreme weakness. PMS can mean exhaustion to the point of being out of breath just trying to get to the bathroom. The period itself can mean I'm so dizzy that everything spins around me while I'm laying in bed with my eyes closed. Not to mention all the other symptoms. For about 12 years now I've been completely incapable of doing anything other than laying in bed and sitting on the toilet for the first day of my period. Surgery didn't help. At all. Healthy women with a normal period and some "normal" cramping can take a pain killer (if they even need it) and go on with their day like they're just a little extra tired. That sounds like a miracle to me. For years I took 12 ibuprofen on the first day of my period to manage the pain. It wasn't enough, but nothing else I tried worked better.
You may assume that just because my hair is clean that it wasn't a struggle to wash it. 50% of the time I shower I'm sitting on the floor of the shower while I wash. It's because it's exhausting to hold my arms up and stand up at the same time. My heart rate skyrockets and I get out of breath. I always wait to shower until times when I'm feeling strong enough. When I have to shower, but I'm not feeling strong enough, I'll often choose to not wash my hair and go out with dirty hair.
I could go on with many many more examples of how I'm not able-bodied. My disability judge and a few doctors agree. (Yes, I won my disability case after 3.5 years - but more on that some other time.) I'm disabled in many ways. But I look healthy. I do my make up, put decent clothes on, wash my hair, don't wear any casts or medical devices, I avoid engaging with people when I'm struggling cognitively... odds are, I won't give you much reason to assume I'm disabled when you actually do see me in public.
What do I need from you? Why do you need to understand all of this?
I need you to believe me. If I say no, I'm not capable. If I say no, I'm not up to it. If I ask you for help, please help. Don't argue. Just believe me. Don't shame me. Just trust me.
I'm a highly independent person who likes to do as much as I can for myself. I've always thought that I need to do things myself to make sure they're done how I want them done. When put a knife through my thumb and couldn't use it for a few weeks, I taught myself how to put my bra on without that thumb. When I couldn't use my right hand due to major wrist problems and was in a brace, I bought a mouse I could use with my left hand and taught myself to write with my left hand. I get creative so I can stay independent. I avoid asking for help. So getting to be this sick has been a challenge for me, because I've had to swallow my pride and learn to ask for help. I've had to accept that I can't perform to my personal standards. It's very humiliating to me. So when I ask for help or say no, and you reply with a lecture or a snarky comment, you just add to humiliation I already personally feel about myself. If you need to say no to me, just say no. Don't attack me in the process.
Ableism. The idea that you assume someone is able to do what you are able to do.
Thanks for listening. :)
Ableism. The idea that you assume someone is able to do what you are able to do.
Thanks for listening. :)
Sunday, September 30, 2018
Dear Christians,
Dear Christians,
Thank you for trying to care and spread love to all of God's creation, even those with chronic illnesses like myself.
But... I have something to say to you.
1. A lack of faith isn't why I suffer.
Why be condescending towards me? Is your faith strong than mine just because you don't have a chronic illness?
2. God doesn't necessarily want me to be "healed."
Do you know God's will for me? Am I pre-destined to be healthy?
3. Suffering doesn't make me a bad Christian.
Living with depression and suffering from disabilities is not the same as living in sin. I don't need to be saved from the burden of physical limitations to reach salvation and find joy in God.
Thank you for trying to care and spread love to all of God's creation, even those with chronic illnesses like myself.
But... I have something to say to you.
1. A lack of faith isn't why I suffer.
Why be condescending towards me? Is your faith strong than mine just because you don't have a chronic illness?
2. God doesn't necessarily want me to be "healed."
Do you know God's will for me? Am I pre-destined to be healthy?
3. Suffering doesn't make me a bad Christian.
Living with depression and suffering from disabilities is not the same as living in sin. I don't need to be saved from the burden of physical limitations to reach salvation and find joy in God.
4. Do I need to be healthy to fulfil my life's purpose?
Are only the most physically and mentally qualified people allowed to do God's will, as if we're hired to do a job with prerequisites?
5. I'm still waiting for you to stop telling me what to do, how to feel, how to act, and what to be. I'm praying for you to seek to understand, not to be understood. All you have to do is let Jesus live through you, you don't need to be a dictator on how to have faith. To quote Bono, "Stop helping God across the road like a little old lady."
6. Laying your hand on me and praying for me in public is not always the best way to spread the Gospel. God blesses those who pray in silence when no one is watching. My faith is deeply personal, and I don't need you to put me on display. I respect and understand the need for a faith community, but while I'm on the clock at my job is not the time to prove your faith for me by forcing me into a few minutes of spoken prayer.
7. Faith is not an emotion. Let me say that again. Faith is not an emotion. If the Christian pop song on K-love doesn't melt my heart, make me stop what I'm doing to put my hands up in the air, and feel God's love it doesn't mean I'm lacking faith. I'm not charismatic in my faith. I don't need God to give me emotional highs to know He's present. I'm not falling away from God and into sin when I feel sad, depressed, lonely, or angry. I'm sorry if I don't look like I'm Christian just because this very new evangelical culture (as in it's not as old as the Church or the Bible) doesn't work for me, but I'm not trying to prove anything to you. I only have to prove my faith to God, and I can do that in silence where no one can see while I'm feeling depressed and angry. I don't want to be on display, fake or force emotions, or even feel guilty for not expressing my faith through emotion. I do not feel guilty for not being charismatic. But you might notice my faith through how I treat and care for people.
8. Consider that my suffering is actually a blessing to my soul, and that perhaps it's helping me serve God better. Is there not something to be learned from any experience? Should we not always grow as people? Can I not be formed into a strong faithful person through difficult times?
9. Stop telling me I'm not doing enough. You think I have to make an appointment with some stranger in some office building to have them pray over me for me to be healed? You think I have to fly to another state to meet with some special spiritual healer over 12 days in order to heal? You think my church community isn't good enough if they're letting me suffer? You think receiving the Sacrament of Anointing of the Sick is not effective and your special spiritual leader is the only one who can help? Have a little faith in me and my faith community.
10. I see that you're trying to make the world fit your worldview that you think encompasses God's will for all of his creation.Please never stop learning, updating your worldview, and seeking new understanding. Stick to your values and morals - you need them! But allow yourself to empathize with people. Sometimes life isn't as simple as following rules that fit your worldview.
11. Consider that I don't have the energy to have deep conversation about which denomination I am every time you see me.Consider that you might be driving me away from the Christian culture due to how exhausting it is to listen to you tell me how my denomination is wrong, my faith is incomplete, and I need to change my personality to fit how people with faith should be.
Thank you for listening. Have a conversation, in which we take turns listening to each other without giving each other orders, with me when I can handle it. Ask for a time when it won't drain me and make me suffer more. Just stop telling me I'm wrong because I'm sick. I'm too tired to keep being beaten down by your lofty standards for Christians. Stop bragging about your faith being why your life is so good and mine has problems.
Sincerely,
A Concerned Christian
Note:
Each of these points are referring to specific encounters with multiple, various people. Most of them were complete strangers. These are not arbitrary references. I've debated on writing this publicly for over a year now, and it's time that I released the pressure and finally just express myself. I am legitimately concerned about how a couple (out of several) Christian cultures is treating people with Chronic Illness, but I believe all Christians need to hear my letter.
5. I'm still waiting for you to stop telling me what to do, how to feel, how to act, and what to be. I'm praying for you to seek to understand, not to be understood. All you have to do is let Jesus live through you, you don't need to be a dictator on how to have faith. To quote Bono, "Stop helping God across the road like a little old lady."
6. Laying your hand on me and praying for me in public is not always the best way to spread the Gospel. God blesses those who pray in silence when no one is watching. My faith is deeply personal, and I don't need you to put me on display. I respect and understand the need for a faith community, but while I'm on the clock at my job is not the time to prove your faith for me by forcing me into a few minutes of spoken prayer.
7. Faith is not an emotion. Let me say that again. Faith is not an emotion. If the Christian pop song on K-love doesn't melt my heart, make me stop what I'm doing to put my hands up in the air, and feel God's love it doesn't mean I'm lacking faith. I'm not charismatic in my faith. I don't need God to give me emotional highs to know He's present. I'm not falling away from God and into sin when I feel sad, depressed, lonely, or angry. I'm sorry if I don't look like I'm Christian just because this very new evangelical culture (as in it's not as old as the Church or the Bible) doesn't work for me, but I'm not trying to prove anything to you. I only have to prove my faith to God, and I can do that in silence where no one can see while I'm feeling depressed and angry. I don't want to be on display, fake or force emotions, or even feel guilty for not expressing my faith through emotion. I do not feel guilty for not being charismatic. But you might notice my faith through how I treat and care for people.
8. Consider that my suffering is actually a blessing to my soul, and that perhaps it's helping me serve God better. Is there not something to be learned from any experience? Should we not always grow as people? Can I not be formed into a strong faithful person through difficult times?
9. Stop telling me I'm not doing enough. You think I have to make an appointment with some stranger in some office building to have them pray over me for me to be healed? You think I have to fly to another state to meet with some special spiritual healer over 12 days in order to heal? You think my church community isn't good enough if they're letting me suffer? You think receiving the Sacrament of Anointing of the Sick is not effective and your special spiritual leader is the only one who can help? Have a little faith in me and my faith community.
10. I see that you're trying to make the world fit your worldview that you think encompasses God's will for all of his creation.Please never stop learning, updating your worldview, and seeking new understanding. Stick to your values and morals - you need them! But allow yourself to empathize with people. Sometimes life isn't as simple as following rules that fit your worldview.
11. Consider that I don't have the energy to have deep conversation about which denomination I am every time you see me.Consider that you might be driving me away from the Christian culture due to how exhausting it is to listen to you tell me how my denomination is wrong, my faith is incomplete, and I need to change my personality to fit how people with faith should be.
Thank you for listening. Have a conversation, in which we take turns listening to each other without giving each other orders, with me when I can handle it. Ask for a time when it won't drain me and make me suffer more. Just stop telling me I'm wrong because I'm sick. I'm too tired to keep being beaten down by your lofty standards for Christians. Stop bragging about your faith being why your life is so good and mine has problems.
Sincerely,
A Concerned Christian
Note:
Each of these points are referring to specific encounters with multiple, various people. Most of them were complete strangers. These are not arbitrary references. I've debated on writing this publicly for over a year now, and it's time that I released the pressure and finally just express myself. I am legitimately concerned about how a couple (out of several) Christian cultures is treating people with Chronic Illness, but I believe all Christians need to hear my letter.
Subscribe to:
Posts (Atom)