When you live with a chronic, incurable illness you can expect a ton of advice. Much like when I was pregnant, everyone seems to have their own opinion on how to manage any particular condition.
Bless their hearts.
Now let me start by saying I truly appreciate everyone’s concern for my well-being. So many wonderful people have offered their advice on how to handle all my ailments -from Lupus to arthritis to fibromyalgia to sjogren’s to vasculitis to neuropathy to unspecified connective tissue disorder to raynaud’s.
Many have offered up suggestions like acupuncture, special herbs, seeing a chiropractor, using certain juices, and even breathing techniques that are supposed to help relieve many of my symptoms.
I am humbled by these friends who truly wish to see me get well and do their best to research and send me their findings. To those friends, I say ‘thank you.’
Then there are those ‘friends’ I would like to, honestly, punch in the face.
The ones who call this illness my own fault for failing to be a woman of God.
You brought this on yourself as you are not a Godly female. God is good and HE sees fit to give you the disease Lupas. The punishment fit the crime and HE only give what you can bear in your burdans. Pray to the LORD that you shall be saved.,and so it shall be with HE,
Putting the horrible grammar and spelling aside (and that’s saying something coming from me) where do people get off telling me I DESERVE to suffer? That my children deserve to suffer with a Mom who is often ill, or that my husband deserves to have a wife who can’t always do all the things she would like with her family?
Then there are the ones who say they have a cure.
Mind you Lupus has no cure. Researchers, doctors, scientists all agree there is no cure and they are working very hard to find one…but there is always someone who says they know this ONE doctor no one else knows about. And wouldn’t you know it…he’s the ONLY one who knows about a CURE for Lupus.
It is very hard for people who have suffered like you and my wife and I (I used to have severe psoriasis) to hear, but autoimmune diseases are a bi-product of ingesting things that the human body was not designed to ingest. All of the foods that humans started eating after the advent of agriculture – grains, beans, potatoes, dairy, artificial ingredients – are not foods. They are slow poisons. Eliminate these slow poisons, and lupus, psoriasis, Crohn’s disease, rheumatoid arthritis, and all the other auto-immune diseases go away, completely. There is very strong scientific evidence of this
A cure? Really? Then why are we pouring millions of dollars into research some doctor has already cured? Why haven’t the millions of other Lupus patients been cured? Why isn’t this ‘cure’ being touted in every medical journal from here to the far ends of the earth? Where is this scientific evidence and why doesn’t my doctor know about it- considering he (and several other doctors I have seen) are world-renowned Lupus experts?
That is the difference with these friends I have. Some wish to help me and others wish to help me while blaming me, ultimately, for bringing this on myself. Or maybe they are not trying to help me…they are just trying to sell me something, be it a diet or God.
As if I don’t carry enough guilt with me for ten lifetimes for getting sick. As if I don’t have to repeat to myself over and over and over again-
This is not my fault. This is not my fault. This IS NOT MY FAULT.
I did not get Lupus because I didn’t pray hard enough, or fall to my knees fast enough, or because I won’t declare Jesus my Lord and Savior.
I did not get Lupus because I ate potatoes.
And you had better believe if I could cure myself of this horrible disorder I would take any pill, eat any food, say the Hail Mary a million times and hop on one foot while balancing a plate on my head while eliminating all foods that start with the letter T and all drinks that are brown.
Perhaps there needs to be a mass circulated etiquette manifesto when dealing with someone who is sick. In fact, I think I will start one. Right now:
1)Give advice when asked, and even then, choose your words carefully
2)Never blame the patient for their disease
3)Do not claim to be an expert on the patient’s illness when your only reference is your brother’s roommate’s mother’s Aunt Anna’s niece’s fourth cousin removed who once had the same thing happen to her except a little bit different
4)Do not share what you learned when Googling the patient’s illness- odds are it will scare the hell out of everyone in the room (go ahead and Google ‘lupus’…I’ll wait…yup…death death and more death…see what I mean?)
5)Never call the patient’s doctor an idiot and say ‘he doesn’t know what he’s talking about’
6)Never start a sentence with ‘But I heard on Dr. Oz…’
7)Never share information with a patient if said information came from an email forwarded to everyone in your Uncle George’s address book.
8)And never, under any circumstance, tell a patient you heard there was a CURE for an incurable disease unless you are DAMN SURE there is one. That means it’s been all over every major paper in the world, CNN, MSNBC, and yes…even Fox ‘News.’ That means millions of patients are now cured and you can have them give their testimony to Barbara Walters, Larry King, Erin Kotecki Vest and Congress. That means Katie Couric is talking about the cure as her top story on the nightly news, Anderson Cooper is in a t-shirt interviewing cured patients as they cry tears of joy.
Because anything short of all of the above is dangling life in front of their face, and then cruelly snatching it away.
9)Know in your heart, as you give a patient advice, that they are doing everything in their power to make themselves well again. They will mostly likely be thankful for your help.
10)Do not second guess a patient’s treatment regimens unless you too are a patient suffering from the same disease, or you are a doctor
What else would you add to this list? How do you handle advice given to you about your illness?
I would love to hear your answers and thoughts, because together we will punch fewer people in the face.
Bless their hearts.
Heh, a LOT of that can apply to mental health issues too. Not exactly as life threatening, though I guess it can be. Just not in ways that be compared to Lupus or Cancer, etc.
My only advice: Live life to the fullest on the days you can, and take comfort that those who matter understand, on the days you can’t.
Won’t cure you but hopefully it helps. Because I promise you, those who matter know THIS ISN’T YOUR FAULT and they love you whether you have the spoons to do everything or not.
PS. The big one with mental health issues is to “Get over it!” If THAT isn’t worth a punch in the face, I don’t know what is.
I have thought a lot about this, since my sis had a chronic illness (MS) for 20 years before she died. She experienced everything you are talking about, except maybe the “God hates how you act as a woman” thing – that’ s pretty fucking far out there on the limb. I love #6 best. Freaking Dr. Oz.
My sis had a huge, complicated wheelchair she could drive with her chin. Little kids would come up to ask about it and their parents would try to jerk them away so as not to offend her. She would say “No, no, it’s okay. They just want to KNOW.” That was the difference between kids and adults. The kids just were curious. The adults had some agenda.
I’m appauld that someone would write such cruel, harsh, and judgemental words. Anyone who would write such garbage is not christian and should never judge until they walk a mile in another’s shoes.
As for your list I think you have it pretty much covered..The only thing I can add is to be there with an ear and strong arm when your friends need support, listen, and offer assistance when they need it.
Why don’t you ask them if they’ve found the cure for stupidity yet?
I’ve had a few well-meaning friends Google my illness and try to make suggestions but for the most part, I just hear how sick people are of hearing that I’m sick. Ha. My father is a doctor and that complicates discussions because he is informed and can second guess my doctor. And I’m no longer friends with the person who told me I *wanted* to be sick so I could get attention. Hahaha. Because I want to be unable to do what I used to and invisible and left out of social things. I guess I should consider myself lucky that no one has tried to change my diet and I ignore the people telling me to pray it away (but I do let people pray for me, as long as I’m not around and they don’t need to rub it in my face).
The best advice is to stick by your sick friends because they need you MORE now. And suggest people with the same illness meet and talk, if only to commiserate about the stupid ‘cures’ people try to send them.
That being said, I am so glad you’re my friend and let me rant like this. 🙂
Suebob is so very wise. The AGENDA is exactly IT.
and you all know you an rant here anytime you please 🙂
Number 1 and number 10 are the ones I identify with the most.
To be honest, I think *more* people need to be punched in the face, start getting the point across.
But maybe that’s just my “inappropriately treated” mood disorder talking. ;-P
I love this post. Don’t even try to punch me in the face, I know kung fu. I’m not giving you any advice. Still have to make that bloody star chart. I was planning on doing it today and yesterday…maybe tmrw. Oh and you rock.
First and foremost Erin, thank you a million times over!!!!!!
I suffer from grave’s and RA and recently have been DX with Fybriods and excessive inflamation along with hair loss and vision loss in one eye list goes on and on.. As i read your bolg i was crying becuase that is what I have heard all of it.
I would like to say that i am with you i didnt ask for this I was Misdiagonosed for many months Peri-menopause is what i was told.
You covered it all in your list but for me personally I get the excerise more. Or you have control of flare ups “just flip the switch”. I would like from them to refrain from that.
Thank you for being the strong loving friend momther wife blogger you are. You can speak for me anytime. 🙂
I second number 6. I’ve even had someone say, “in this one episode of House…”. Yeah, not helpful. Though, I smile, say thank you and, if they are really driving me nuts, I ask them incessantly to donate to my fundraising walk.
I cannot believe the audacity of the person who said you’re not “godly” enough. I hope it was some random troll, and not anyone you know IRL.
I think I would have to say, “If your imaginary friend is the sort to deliberately give people diseases that make them suffer the way I do, then I don’t think he’s someone worthy of worship.”
Hugs,
Amy
Oh, people. This is a great list. A great one.
My only addition is when people try to find the silver lining for you. “Well, if you weren’t sick, you wouldn’t have met x or done y or accomplished z!” My reaction is always an internal version of: “Listen, I’m a crazy(stupid) positive person. And I’ll find a silver lining. Myself. Not you. You? You hush.”
Thinking of you.
I can’t imagine what makes people do these things. As one who also battles a few autoimmune diseases (though not on your scale), I’d like to add a few things:
11. Don’t assume someone is just lazy and wants attention.
12. If you break rule #11, at least have the human decency to not voice that assumption at the sick person.
And the Dr. Oz thing had me rolling. My mom cuts articles out of her tiny hometown paper about rare diseases and diagnoses me with them. My BIL saw something on the news about eating food from the grill causing problems. At least these are people who love me and want me to get better, but I still roll my eyes.
The only thing I do when friends are suffering like this is say “Wow. This sucks. Let me know if I can help.” and then I leave it at that. So that’s what I say to you. The trolls can suckit.
Ignore ignore ignore.
I do a lot of that. With me it’s “I know JUST how you feel, I had pneumonia once.” Really? You have any idea what it’s like to have 19% lung capacity (about the size of a sm lemon)? To be waiting for someone to die, so you have a chance to live a few more years? I’m sure YOU know JUST how I feel.
Luckily I’m pretty good it hitting my internal ignore button and I don’t think my eyes *actually* glaze over when they are talking.
Most people are just trying to help in the only way they know how, faced with something so large they can’t comprehend the scope. Even if you’ve heard it a million times, they think they are bringing the NEWEST and GREATEST thing EVER.
The only thing I really *jump* on people about and forcibly correct them is false information about ME. IE, calling what I have the wrong thing (it’s cystic fibrosis, not fibromyalgia or multiple sclerosis),claiming I’ve had or am having some incorrect procedure, or what exactly my stats and list placement are. Other than that, let them rattle. I live in a tiny town where everyone knows everyone they are going to talk, just let them talk about the RIGHT thing!
First, the people that claim it’s got something to do with how much god dislikes you or something you did? It’s perfectly okay to punch them in the throat, the face, or just straight-up junk-punch them. It’s god’s will that they get punched for being such douchemunchers. I know. He told me. Also.
That being said … Don’t act like whatever someone has is contagious. I can’t tell you the number of parents that jerk their curious, friendly kids away from my son in his wheelchair as if their kid is going to ‘catch’ whatever it is that he has. a) I wouldn’t have him out in public if he were contagious you nitwit and b) are you really stupid enough to think that such profound disabilities are CONFUCKINGTAGIOUS?! Your stupidity is more contagious than what has afflicted my son, so stay back from me because I don’t want to get any of your stupidz on me.
There. I feel better. Love you Erin. Your strength and courage and resilience are an inspiration to me every day. I will send you scones and ginger cookies any time if they help soothe your soul.
It reminds me of the people who tell us we can cure our son of his Aspergers by changing his diet. A lot of these radical, disease curing diets actually cause more harm to the human body because they eliminate essential nutrients (vitamins and minerals) the body needs!
Let me just start by saying “punch me in the face” right now. Seriously. It would save me the hassle of typing a response that will go on blind eyes.
I have to start with – I totally disagree with your disease being a punishment. Comments like that are judgmental, hateful and mean. Saying you deserve it-equally mean. But to discount nutrition and lifestyle, well why? Why not consider that dietary and lifestyle changes might make a difference. Do you really think that people were designed to sit at a desk all day, drive to work, shop for food, sit on the sofa with a remote control, etc?
We were designed to hunt and gather- daily. Eat mostly fresh fruit and vegetables. Does it make sense that we would eat canned, processed, pasteurized, microwaved food etc? And that eating that may cause disease. “but my doctor said” well, doctors get paid to treat your decease, ESP since their is “no cure”. They make no money telling you to “not eat potatoes” Doctors are not malicious. That is how they are taught to think. To find a cure, not remove what is causing the illness in the first place.
Do you really think that humans are meant to have so many different diseases? Why not ask yourself “does this make sense?”. Does drinking milk from an other animal make sense? Honestly. Or taking said milk and processing it further into cheese. You honestly think that changing your diet will have no influence on your health? There is a book written by an MD that addresses this and gives guidance for working with your physician toward reversing auto-immune disorders. http://www.amazon.com/gp/aw/d/031218719X/ref=redir_mdp_mobile/183-1360086-1807226
I’m sure it can be borrowed for free from the library. It doesn’t hurt to look at it….
Kellie,
Seriously?
Can I punch you in the face if Erin won’t?
She *clearly* didn’t want this type of dialog right now.
Just let it alone, dude.
And learn how to comprehend the words you read.
I’m sure you can borrow books on it for free from the library. It doesn’t hurt to look…
Kellie,
Who said I wasn’t taking diet and nutrition into account? Who said my doctor isn’t on board and making healthy eating part of my illness management? Who said my doctor doesn’t give me lists upon lists of foods with anti-inflammatory properties and lists upon lists of which to avoid because they are bad for me and will cause more inflammation?
You sure do make a lot of assumptions and clearly are an expert on my particular disorders then….right?
You can talk all you want about reversing auto-immune disorders but do not pretend that you can cure me. Do not pretend you know more about my very complex case than my doctor and do not pretend I am sitting here eating shit because I clearly don’t care enough about my well being to eat the ‘right’ foods.
Because I possible couldn’t have anything to live for, right? I’m clearly I’m just LAZY and feel like ignoring any and all possibilities that might make me better.
You know what Kellie…you talk about how mean people are for saying I deserve it or judging me and then you spend several paragraphs doing just that. Show me how you can CURE my disorder better than my doctor… show me how you have more information about what I eat than my doctor. Show me where I discounted nutrition as a way of helping to manage my illness…if you go back and read again properly you will see it was those who call the diet a ‘cure’ I take issue with. Because there is NO CURE. Can it help with my symptoms? Yes. Thus why my doctor advises me on which foods to avoid and which to stock up on… but can it CURE me, no.
You know NOTHING of my family and it’s genetic trail and you know NOTHING about what my body needs in order to be healthy.
All you seem to know is how to do exactly what I asked you not to do. Bravo.
Now if you will excuse me, I have a pint of COW JUICES frozen to eat because my doctor said I could. I think I will top if off with some artificially colored cherries just for fun.
I’ll be second in line to punch Kellie in the face then. Just to condense Kellie’s post for those that don’t want to read the whole 5 paragraphs of douchewankery: “I read what you wrote, but I don’t really care about what you want or need because I’d rather say something totally asinine and be a jackass instead.”
i would add not to offer vague terms of help. often, people with chronic illnesses can’t/ won’t/ don’t like to ask for help. offer specific help. for example “hey, erin, i would like to bring a casserole over on wednesday. is that ok?” or “do you have any ironing i could help you with?” then bring the food or do the favor and have the decency to leave.
i really hate when people come to visit when you’re sick and stay for way too long, not taking the “i’m tired” cues. one person told me they’d just wait while i napped. uh. no.
Come on kid, you know its either God messing with you or the Man trying to keep you down!
Scared and/or uncomfortable people will always fall back on one of the other, and when you bring things out into the open like you do, you scare some people and make them uncomfortable. Their problem, not yours.
@ Blue thank you so much for that last post….
“douchewankery” is such a better term than I was thinking…. 🙂
She tottally missed the mark not to offer advice…. and what does she do offers it up anyhow… SERIUOSLY! get with it @ kellie!!!!
I feel the need to clarify that no one is REALLY punching anyone in the face…nor would I ever really condone such an action. It’s written in a way to get my point across. I would never actually punch anyone in the face, but i might kick a few people in the balls.
Do you think Kellie would come cook for me? While it may not ‘cure’ what’s wrong with me, it will allow me to have breakfast (and lunch and dinner) in bed so I don’t exacerbate my heart condition by doing the stairs. 😉 Shame she didn’t leave a website I could go to so I could ask her myself.
When my son was in the throws of an auto-immune disease he absolutely detested when asked, “How are you feeling today?” Which, I asked every morning. But I get it, I didn’t ask my daughter that and my asking that one question, just reminded him that he was sick and different. Eventually I learned to greet him in the morning with just a “Good Morning.”
If things were not good, he’d let me know.
I would add #11 Simply be there for and with your friend. A very dear friend of mine had cancer. I watched all that you have described in your blog happen to her. I also watched as she was surrounded when she announced she had cancer but many people, many of whom hardly acknowledged her before. As the newness of the cancer announcement wore off, people faded away. There ended up being several of us who were there to take over food when she was too tired to fix something, drive her to chemo, simply run errands or sit with her.
This is an excellent manifesto and should be read by all. I’ll tweet it out later tonight.
My mouth dropped open reading the “God hates you” nonsense but then I started reading the comments and got to Kellie and said out loud at my desk “what the fuck?” Seriously? I’m in the punch her in the face line. Because that right there, was some rude, ignorant crap. Never once did she say she hasn’t changed her diet. And even if she hasn’t, she doesn’t need from you or any of us whom she has NOT directly consulted for said advice, to offer her advice. Listen to your friends and acquaintances who are ill. Listen and really hear. And then ask what you can do. Don’t assume. Don’t offer. Ask. Don’t put your fears/beliefs/fake ass cures into her equation.
My favorites are people who say create a vision board and put your wish for health into the universe. B/c of course it’ll answer. You just have to believe. It’s all in your mind anyway, you know. Just watch The Secret; it’ll have all the answers. Or, this is just God’s plan; it’s what was meant to be. Oh, you mean be in excruciating pain, potentially leaving my children w/no mother, my husband w/no wife? Great plan, God.
Elana, that is one that gets to me also “how are you feeling” but I also detest this one” you dont look so good”
I have lost many a friend because of my illness (Graves’) They hear the word “disease” and run. Why? i’m still not sure. At first I didnt say anything to them but when the Symptoms really started to show (hair loss, vision issues, mood) I had no choice. and that was the response I got. People who i thought would be there for me …ran…
I have a host of issues beyond and on top of the Graves’ things I would once do I can no longer, being “close” to my husband, playing with the kids, or just plain climbing stairs. What i needed was friends to vent to , to share with, and they ran.
I thank Erin with all my heart for sharing in her pain and struggles, the joys and let downs and just being a friend who can voice what I cant but so want to.
I’d genuinely like to know what these people who think God is punishing you would think if one of their own children got sick. If they had a baby born with a terrible birth defect, or had their two-year-old get cancer. Do kids bring illness upon themselves? Newborns? Fetuses in the womb? What did my own son as a newborn to “deserve” developing a tumor on his skull that was in danger of doing permanent brain or vision damage, I wonder?
Oh, right. Someone else has an explanation for that. That was my fault for eating the wrong foods when I was pregnant, right? Never mind that my OBGYN said I ate more healthily than 90% of his patients.
People who believe severe illness is some sort of natural punishment, either for religious sin or for unhealthy behavior, are just so terrified that the same thing could happen to them that they are desperate to find a reason why it couldn’t.
Sometimes bad things do happen to good people for no reasonable reason.
Anyway, Erin, I know enough not to be THAT kind of jerk, but I hope I’m not regularly giving you OTHER reasons to punch me in the face. It’s hard to come up with the right things to say when all I really wish I could say is some mythical magic word that would make your disease go away forever. Sigh.
My friend posted this to my facebook page today and I am so glad she did. I started screening my calls because of #6. Well meaning friends and family members who think the first, second, and third opinions I received are all wrong because of something they saw on Dr. Oz.
Years ago, I worked as a media person for the local rape prevention program. One of the counselors said to us, “hey — if someone got hit by a car, you wouldn’t ask them what they were wearing when the car hit them, or if they secretly wanted the car to hit them, or if they enjoyed it … or if they’d brought it on themselves. Well the same thing goes for rape.”
I’ve used that many times over the years; and since I was diagnosed with a rather impressive spectrum of autoimmune conditions, I have used the same premise — and you’re welcome to borrow it. ( It was, frankly, the same problem I had with The Secret and other books like it — it implied that if, say, Africa just thought more positively its problems would be over!)
It’s all about the illusion of control: if you do/don’t do something, this horrible thing won’t happen/this great thing will happen. (Yeah, and if you sacrifice a virgin there won’t be an eclipse, either. See how well that works?)
Just smile and roll your eyes, because most people will deal with something like this in their lifetimes… let’s hope they permalink to your post.
Well, maybe it’s because I’ve moved on to another phase of my “we don’t know what causes that, but it’s going to mess up your life and just get worse” disease Erin, or maybe it’s that you get a f$ckton more unsolicited advice than I do. But I utterly, completely, and totally disagree with #1 on your list.
“1)Give advice when asked, and even then, choose your words carefully”
Give me advice whenever you have it. If you have actual insight? I might incorporate it into what I try *next.* I might have already heard it 3,000 times. If I say, ‘thanks, but I’m familiar with that already’ then move on. But for insert-your-deity-of-choice’s sake? Give me that advice. Because you MIGHT be the one who has some crucial little bit of information that makes this pain go down to a bearable level. You MIGHT be the one who will tell me something my doctor will later go down as a Nobel prize winner for. You MIGHT just know the one combination that will get me off of the drugs I -know- are just treating the symptoms not the cause because Big Pharma isn’t interested in the cause.
Erin, I get why this is YOUR manifesto – but it’s not for everyone. It was one person giving my sister-in-law unsolicited advice (has your oncologist run this test?) that turned into the “well it can’t hurt to try it” that turned into the “I’ll be damned – you do have that excruciatingly rare condition that mimics emphysema and can be cured with a very specific round of antibiotics – you don’t have to have a lung transplant after all” moment for her. When she was on the top of the transplant list. And it was her bizarre story that made a physician at her daughter’s school whose husband was heading down the exact same path, but not as far along, run the freaking test and find out that he, too, was that on in millions that had the condition.
So yeah… give me your advice. Email it to me. Ask me in casual conversation. Put me in contact with whomever it is that you know that had success with some random treatment X. I don’t think you can “cure” what it is that’s causing my issues unless you know what causes them. But if there’s something that will make this endless loop of new diets, new drugs, and new health issues a little less painful? Hell, I’ll sit through that bad grammar and being told it’s all because I’m a bad person. I’ll even convert to whatever crackpot religion you’re peddling IF you can prove without a doubt that doing so will magically help.
Other than that? I’m kinda in agreement with you. But I’m also kinda wishing I could quit hearing phrases like “general overall deterioration” and “laundry list of issues” and “not sure where to start” from my doctors and if giving up potatoes is what it takes? (It isn’t, I tried that) Well. I guess I’ll deny my Irish heritage.
p.s. If someone here wants to email me your advice? lmpruittATgmailDoTcom – I’m not turning on comments notification, Erin’s comments drown my inbox if it’s something like this… but y’all can figure out how that address works. Even those who want to punch me for not agreeing 100% with Erin just because SHE is sick. I love her, it’s not her fault, but I’m sure as hell not going to start coddling her now by pretending that everything she writes is without a doubt the Truth-capital-T. Besides, I’ve got an excruciatingly high pain tolerance now and I can take it, because I’m not always right – but I’m usually right for me.
Ha! Lucretia, really good point. That has happened numerous times– and you’re right, it can save lives. A moment like that saved my dad’s life; and a story I told about my daughter saved someone else’s. My issue is that autoimmune diseases are so individual — my lupus is in remission at the moment, but I have other stuff going on, so who am I to tell anyone what to do? I can tell them what my doc did to get my lupus in remission — and they can decide what to do with that info, if it helps.
Anyway. Great discussion. Thanks.
Sorry Lucretia but I’ve had enough unsolicited advice to last me a lifetime. This is my manifesto and for me, therefor the theory that this is not for you is exactly right. As I stated in the preceding paragraphs, I’ve been given some very thoughtful advice from very well meaning people. And as I stated, I’m thankful for it. And as I went on to state, I’ve received some mean advice which I will now attempt to avoid at all costs because it causes me more stress, and more emotional rage than is helpful. In other words, I do not have the energy to spare and the risk does not outweigh the potential. If someone does have something worth telling me, that may in fact save my life, then as I state…choose your words carefully. No more, no less. Life is too short and my time too precious for anything less than thoughtfulness.
Luckily 90% of those coming to me with stories or advice have been thoughtful, and I’m happy to have been given their insight. The other 10% did not follow those 10 ideas above and caused me more stress and have gotten me more upset than a sick woman need be. Ever. I no longer have room for those people in my life.
I’m glad you can sit through that 10% in your search for a cure or help or pain relief or whatever you need to get by, I can’t. I physically can not do it. I am too passionate and too sensitive and too easily upset that I do not want it anywhere near me.
But that is where I am thankful (as mentioned in the post) to the other 90% who are sincere and kind and well meaning when giving me their knowledge. The other 10% will never have anything of value for me because they are not truly trying to help. They are trying to blame or sell.
Geez, just stop eating potatoes fer-cryin-out-loud!
😉
I was recently annoyed with a friend who tried to tell me about some procedure that their friend’s brother had for his ulcerative colitis that involved some kind of drainage tube. He had to wear Depends for awhile. And they’re not sure if it really helped. But it sounded like it gave him some relief, so they would be sure and get me the information as soon as they could.
Thanks for that. I’m sure I won’t mind the depends if I only have to have them for a little while.
Sigh.
And, yes, omg, yes… I am sick of hearing how my diet is why I am sick. No matter that all information on UC clearly states that diet does not cause it.
I effing hate it when I’m struggling with my depression and someone says, “Just look on the bright side!” or “Count your blessings!” Or when I’m struggling with anxiety and someone says, “Just take deep breaths and remind yourself that nothing’s actually wrong.” Great, thanks. I never thought of that.
Love you, lady!
As someone who works with immunologists that focus on causes and cures for auto immune diseases I want to have a serious conversation with Kellie about how delusional she is.
As a person, I want to have an even more serious conversation with Kellie about sensitivity and tact.
Anyhoo, Erin, I’m quite sure I’d have written the same manifesto if I were in your shoes. Brava!
When my infant son was sick with a serious heart condition requiring heart surgery at five months old it made me absolutely insane when people would tell us, “Don’t worry, I know he will be fine.” I wanted to shout, “REALLY? You do? You honestly have it on some higher authority that he is going to be just fine? No you don’t! So don’t offer that to me, we are in serious pain and serious uncertainty, so do NOT tell me YOU know he is going to be fine.”
That one gets me every time and I hear it so often when someone is sick. The other one I think should be banned from the spoken language, “It could be worse.” Yes, I know it could e worse, but right now it does not feel that way and honestly who are you to tell us “it could be worse,” and how can that possibly help us to cope?”
Sorry for all you are going through. It sucks!
I’m circling back late Erin. But just wanted to say “yes, I totally get that.”
To be honest? The 10% always seem louder and more present than the 90% despite the numbers. And yes, you should save your energy for the good stuff, because wasting it on the others won’t change them, nor make your life any better.
Love you my friend. Wish you didn’t ever have to write a piece like this. Not surprised at all though. Wish I were.
Hi Queen of Spain – Noticed your information from my pal Nic, read your blog.
I worked in a Cancer Center for four years. It was very frustrating to read/.hear abt what ppl had to say abt the patient’s illness, and how patient’s would sometimes blame themselves! ….all sorts of stuff, like the things you listed,,,,, well, you know, there’s really a cure……well, cancer is caused by your own emotional negativity,…… well, it’s caused from stress…and none of these things have any scientific research to back them up.
I sure don’t believe that God has laid this at your feet……sure alot of truly ignorant ppl out there.
Stay strong and God bless you and your family.
YES. I so feel this post.
Sending love.
I must respond!! I was diagnosed with Lupus when I was 23, I am 49 and they are still not completely sure what I have. I have empathy for you.
However, The God thing is beyond hypocritical! MY God says not to judge others! My God says to love all and to preach by example and not by word. Those people who have the audacity to say you deserve to be sick are the kind of people who will be suprised on THEIR judgement day!
Bless your heart for not slapping them in the face!
WWWHHHHAATTT!!!?? How dare ANYONE say that God has brought on Lupus because you are not a believer? They will be judged, you better believe that.
God is fair, good, and wishes to restore us. We live in a fallen world where bad things happen; they just do.
Good for you for staying strong. I’m a long time twitter follower and blog reader but never commented. Just catching up on my feeds and noticed this post.
Stay strong.
Every member of my immediate family has a rare disease (mostly different ones). I find I rarely have to deal with people making comments about mine, probably because it has a known cause. However, I do admit that I sometimes engage in #1 or #5 (though not with that language) because in the case of my illness there is, for many aspects of it, a known treatment but the disorder is rare enough many doctors aren’t familiar with it, so if it’s going to save someone’s life then I’ll speak up, but I choose my words VERY carefully (so, calling a doc an idiot isn’t something I’ll do, but I have told a person that their doctor doesn’t appear to be operating on the latest information and then I prove that).
But, I do hear this stuff a lot in regards to my husband’s autoimmune diseases and our older son’s autism. Ayiyiyiyi! I echo the commentor who said that people insisting “it’ll all be ok” should be banned. You don’t KNOW that! Don’t tell me that because it might not be ok! In fact, since there is no cure, it’s NOT going to be ok and the best we can do is create an otherwise happy life. I’d also like to propose banning the phrase “you don’t look sick.” All 4 of us get that one.
And soooo much agreement on #6 and #8. A friend emailing me with the latest “cure” for autism just drove me to tears one night. I feel like those type of people, who send you “cures” for that which there is none, are then judging you for not jumping on the latest fad train. Like, “well, if you REALLY cared about yourself/your child, you’d try EVERYTHING. otherwise, you are just lazy/selfish.”
11) Don’t try to out-sick the person by explaining that at least they don’t have Disease XYZ which you have and is much, much worse.
12) If they are a believer, don’t tell them “God works in mysterious ways.” Or “He must know you are really strong to let you go through this.”
13) Don’t define them by the disease. For God’s sake, they KNOW they have lupus/cancer/depression/whatever. Find something else to talk about. Puppies. Reality TV, politics, ANYTHING.
Hi! I read this about two weeks ago and I spent a good part of the day trying to figure out how to respond… or if I even should respond. Besides being a jewelry designer, I am also a chiropractor. Easy, friends. There are lots of different kinds of chiropractors… and since my mom is an MD, I sort of a middle of the road kind of DC. And besides that, I’m not here to offer medical advice.
I’m here to share.
Yesterday I was listening to NPR and there was a really good program on about entrepreneurs. I was only able to listen to the first 5 minutes when I arrived home with a sleepy baby that needed to be put to bed. I did my motherly duties and then I went to look to see if I could listen to the program as a download or maybe it was even still on. So, I went to facebook and ‘liked’ the NPR page because I knew it would have a link to the website. Sadly, I wasn’t able to find the program on my phone. I went about my business and forgot about it.
About an hour later, I got a facebook ‘message’ from a family member. She went into great detail explaining to me about the ‘ills’ of NPR. Gheesh! It really pissed me off. All political and stuff. She put a LOT of energy and articulation into her diatribe. My very first thought was… Man, doesn’t she have anything better to do than scan people’s updates on facebook?
And then I realized that what made me the most frustrated was that it was such a waste of time. The whole situation could’ve been avoided by her simply asking a question… instead of offering unsolicited advice. (particularly about politics and health).
Which brings me to my suggestion for your list.
#? If you have some solid advice to offer on a subject that you are passionate about, please ask the recipient of ‘said’ advice if they are interested in receiving your information. And most importantly, be prepared for the recipient to say, ‘No, Thank You’… in which case, you release them and love them anyway.
Thanks for letting me share. My experience gave me a little perspective about the advice I might offer and how it could (potentially) make someone feel.
I hope that you have a wonderful time at BlogHer11 with your fancy cane and comfortable shoes. Trust me, if I was there, I would be wearing comfortable shoes, too!
I can’t relate, I’ve never had a disease like the ones you are talking about. But Oh My God. The most annoying thing anyone has ever said to me was “Keep praying”. It was insulting, demeaning and implied that my lack of faith, My inability to press into God and who knows what else was causing MY baby to die within me. It blamed me for the most cruel and disheartening time in my life, and I’ve never forgotten it.
These days, if I’m asked, I offer to go to doctors appointments with people, and to help them research what their doctors have told them. I take notes while friends listen in stunned silences and I offer endless cups of coffee and hugs and mutual tears. I don’t speak those ridiculous phrases that you have mentioned. Because they bloody hurt. And they are NEVER forgotten.