Sick Humor: Information Overload: “Suggestions” We’d Rather Not Hear Ever Again

 

I know they mean well. I mean, it may not seem that way at the time to them. I may roll my eyes, dramatically sigh and wince at the friendly “suggestions” that innocent friends and family members offer up to me at random intervals of my life. I am learning as the years go by to smile and let them spout their new found knowledge. I am learning patience because, let’s face it….they aren’t trying to snap that last nerve we have like an overstretched rubber band on purpose. They honestly are trying to help in the only way they know how, unaware that we have heard it all before. In fact, we have heard them so many times that I could probably rattle them off to you in alphabetical order within 30 seconds. You guys know what I’m talking about…the dreaded…. “Are you sure you should be doing that because I read that (insert activity of choice here) is bad for you.”

When I hear it from people I am close to, I try my best to step back and look at it from their point of view. They love me. They think they are helping. Unfortunately as the old saying goes, ‘a little bit of information is a dangerous thing.’ Armed with their new found information, loved ones continually bombard me with what I should and shouldn’t do. Because I love them too (at least for the time being…) I usually allow them to finish their suggestions and politely say “Thank you for your concern…it means a lot to me, however…..” I then add a conversation closer of my choosing, making sure they know that their suggestion has been taken to heart, but the discussion has ended. On the flip side however, when people I barely know try to impart some “words of wisdom” upon me, my reaction, unfortunately, isn’t so diplomatic. I’ve lived with Lupus for 10 years. Handing me an article you printed off the Internet and glaring at my Diet Coke won’t make me put it down. In fact, it will probably make me chug it and rush to the soda machine to buy another one while I down a pot of coffee. Childish? Probably. But all that frustration that I bottled up smiling at my loved one just exploded onto the unsuspecting acquaintance.

So, because I sat here trying to figure out what is actually the best way to handle such unwanted advice, I decided…what the hell….I’m going to create a list of some of my favorites and responses that I have actually said to the perpetrators. This is not a list of ‘what I would’ve said had I not been reserved’. This is a list of yeah, Steph’s head spun around and fire shot out of her eye sockets, responses. Some of you may agree with them, some of you may think I need my mouth Gorilla Glued shut….but in the end, NONE of you can deny that these statements said over and over to you doesn’t eventually make you lose your cool at least once. So, use this list as your verbal weapons of mass destruction, use it for a much needed laugh, or use it as a guide for what not to do. The bottom line is we have all dealt with at least one of these phrases and not known how to respond. I’ll start with the one I have already mentioned. Feel free to add the ones that you have heard that are not listed. I’m sure between the thousands of Spoonies out there, we could fill a few novels full of them that would rival the length of the Harry Potter and Twilight series combined.

“Are you sure you should be drinking caffeine? I heard that it’s bad for people with autoimmune disorders.”
 
This is one of my favorites just for the simple fact that it makes me giggle. And when I say giggle, I mean laugh like a narc’ed up hyena. For a year, I injected myself with chemo once a week. Know what chemo is, kids? It’s basically poison. I injected myself with poison, and followed it up with enough pills to fill a tool box. After that, I daily popped an immuno-suppressant drug that is given to organ transplant recipients. After THAT, I got a fun little (and by little I mean mammoth) shot in the butt of Prednisone that felt like someone had just injected liquid fire into my skin and it burst into flames and slid off my butt. Forgive me if I like my caffeine in the form of soda and coffee. I highly doubt that that second cup is going to be my demise. In fact, it wakes me up from the muscle relaxers that I have to take in the morning, and prevents me from walking into glass doors. Yeah….that has happened. A lot. Next question.
 
“I read that you really shouldn’t be highlighting your hair like that. The chemicals could seep into your brain and activate your Lupus even more.”
 
Yes, this was actually said to me, believe it or not. After staring at her for a full minute with my eyebrows raised and a complete “have you been sniffing bleach” look, I burst out laughing. It’s hair color people….it’s not some peroxide infused science project. Here’s the cold hard truth…my hair falls out. Lots of Spoonie’s hair falls out. And I’m not talking a strand here and a strand there. I’m talking handfuls of “where in the *&#^@ did THAT come from” clumps. After a hairstyling session on any given day, my bathroom looks like a herd of Ewoks just paraded through and molted. Is hair color perfectly safe? Of course not. It’s chemicals and chemicals are not natural. Then again, neither are shots of Cortisone shoved between your shoulder blades. I rest my case.
 
 “There was a special on TV the other night that said most of your problems are caused by the amount of pills you take. I bet if you eliminate some of them, you’d feel tons better.”
 
*cue the chorus of hallelujah angels* Why didn’t I think of that? And here I was, popping 31 pills a day because they put a little pep in my step and the colors line up like a rainbow on my dresser. This one makes me not so much laugh as look at them like they spontaneously grew a third eyeball in the center of their forehead. After I ask to see their medical degree, I try to explain that I am on certain medications for a reason, and the fact that my Rheumatologist has chosen to put me on them, pretty much means that reason is so I don’t crumple like a rag doll. Of course there are side effects to my medicine, the anti-nausea meds cure the vomit intervals, but it knocks me out like I’d just been slipped something illegal in my drink. But then again, I would wager a guess that the four acetaminophen pills that you just threw back aren’t without their own backlash, either. However, let’s test your theory. I’ll stop my pain meds and anti-depressant and in return, you will lock the door to the house, bolt the windows and hand me the key as you sit fidgeting on the couch. Wait…where are you going?
 
 “Why do you force yourself to exercise? All you’re doing is making yourself hurt worse. It’s almost like you are self-inflicting your pain.”
 
This one makes me want to pick up the 6 pound hand weight in my garage and clock them over the head with it. Self-inflicted? Seriously? Trust me, if I could sit on my rear end and let that treadmill collect four inches of dust, becoming a storage facility for all my Christmas decorations, I would. I surely don’t enjoy gasping for air, icing my knees with frozen vegetables or having to take some extra anti-inflammatory drugs, but here’s the difference between you and me….you work out by choice…I work out to function. That may sound rather dramatic to some of you, but it’s the truth. My muscles try to devour themselves…no exaggeration. The very simplest definition of autoimmune is the body turning on itself. My body sees my entire body as an invader and tries to kill it. Muscles, joints, cartilage, organs….nothing is exempt or spared. That’s the way the ball bounces for us. I don’t lift weights to have impressive biceps or quads that could cut glass. I lift weights to try to strengthen what is being taken from me at an alarming rate. I don’t walk on the treadmill to lose weight. I walk to strengthen a heart that is being attacked on a daily basis. Some live to work out….I work out to live. Think about it.
 
 “I am not so sure you should be having that glass of wine. Alcohol is bad for you.”
 
 News flash!!! Here’s a list of other things that are bad for me: steroids, NSAIDS, anti-inflammatory, narcotics, anti-nausea pills, synthetic thyroid meds, anti-depressants, anti-malarials, sleeping pills, muscle relaxers, immuno-supressants, chemotherapy and pain patches. Impressed? I haven’t even scratched the surface. That was just off the top of my head. This is my daily regimen and I literally have to keep all my medicine in a large lunch pail to keep them together. I understand your point to a degree. Would it be detrimental for me to do about six tequila shots then follow it up with a couple of bloody marys and a bottle of champagne? Of course! That’s detrimental to anyone. However, I highly doubt that a glass of fermented grapes here and there is going to pickle my liver. Besides, if you’re going to pick on me for the occasional glass of wine, I have a few things to say about your cream cheese danish and Red Bull in your hand. Oh yes….I went there. *disclaimer* All Spoonies know that alcohol and chemo do not mix. I am not referring to the times I was on it*

 

“You’re problem is that you sleep too much. Too much sleep is just as bad as not enough sleep. You need to get outside and have some fresh air. You’ll feel better.”

I have saved the best for last, as this one left me completely speechless, which if you know me well enough, you know that is fairly impossible. I sleep too much? Let me set the record straight right here and right now….there is nosuch thing as too much sleep when you suffer from an autoimmune disease. Sleep is a valuable commodity that unfortunately eludes us on a regular basis. Here’s an example…when you have the flu and your body just aches so bad that you can’t keep still….can you peacefully drift into a restful sleep? I didn’t think so. Now, imagine that happening every night of your life. It doesn’t quite lend itself to being bright eyed and bushy tailed in the morning, trust me. Most of the time I walk around looking like I could be cast in the next Twilight movie as Edward’s not so supernatural sister. Naps are a luxury that, when available, I snatch up and run with like I had just won the Publisher’s Clearing House grand prize. There are times that I sleep for 48 hours straight, but that is usually to make up for the 3 nights that I spent crying, watching the minutes and hours tick by on the clock. Less sleep won’t make me feel better….it will make me so psychotic that I would make Lindsay Lohan look like a normal functioning member of society.

As I posed the question on twitter a little while ago, I was alternately shocked and snickering at the responses that came through. I asked, what are some of the things that are said to you in the statement, “You really shouldn’t ______, it’s bad for you.” I got answers that ranged from “eat chicken” to “have kids”. It amazed me the completely asinine things that are said to us on a daily basis in the name of “helping.” As I said in my opening paragraph, over the years I have learned to let a lot of these statements not bother me for the most part. One of my favorite sayings as of late is from my dear friend Chelle. When I get frustrated and angry at statements that are thrown at me, she calmly tells me. “Steph, be a duck…and let it roll off  like water on a duck’s back.”

I guess in the end, that‘s all any of us can do. And to those who continually shove hurtful and unwanted accusations down our throats at how we choose to survive, I have but one thing left to say.

Quack.

Article written by staff editor, Stephanie Kennedy.

About Stephanie: I live in Fayetteville, NC with my husband and 3 always hyperactive and occasionally adorable children. I was diagnosed with SLE in 2001 at the age of 27 and in the time since, have added Scleroderma, Hashimoto and Celiac disease. In my day-to-day life I am a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) and a part-time blogging snarkzilla.  I can always be found somewhere in social media-land causing some sort of trouble.  Find me on twitter at @steph_in_nc or on facebook at Stephanie Welborn Kennedy.
©2022butyoudontlooksick.com
  • Morgan

    This is great. Thank you. Passing it on.

    Sapphire, my former therapist talked about developing “smart skin”: the kind that knows which stuff is useful and so your skin lets you take it in, and which is not useful and so your skin keeps it out.

  • Faith

    OMG! These are great! The one about you take too many pills and should probably stop taking so many always gets me and just makes me want to spit fire worse than a dragon. I also dare anyone to tell me I shouldn’t have a glass of wine. I try to be nice but when people start sending me links or giving me their “advice” but I really want to scream. I ignore the emails but when they’re in front of me I can’t do that. Sometimes I do tell people that they need to spend a day in my body then they will have the right to give me advice.

  • Deborah Brent

    I love the comment Oh but you look good!

    Michelle,
    Many years ago I had cancer. It started my downward spiral into fibro and needing O2.

    When I was first dx’d I would get the above comment. I often wanted to ask what i was supposed to look like? I was tempted to do an Igor pose.

    Deborah Brent

  • I think I’m in love with you.

    I usually try to smile but I suspect it’s more of a “Wow you are really brilliant at being an idiot, aren’t you?” smile and say, “Gee, thanks for thinking of me,” then do an about face and walk off with as much coordination and dignity as I can muster. If I happen to whack someone in the shin with my cane, so much the better.

  • Steph

    So sorry to hear that you had to go through that Colleen. I wish people would be supportive instead of just walking away. However, actually SOME of the people who say these things do me, absolutely know that I already have heard them multiple times. I actually think they are making a hobby out of it…lol. Ahh well…nothing wrong with a little venting, I say. If I don’t vent….well, I’m pretty sure I’d explode…and that’s just messy for all involved 😉

  • Colleen

    For me, people just went out of my life when they found out all that was wrong with me.

    No one says I should or I shouldnt because I’m isolated and a shut-in. Sometimes I don’t see a person for weeks on end.

    Even Jesus said as He was dying on the cross – Forgive them Father for they know not what they do.

    These people just care and want to help. They have no idea that you already know over and above about your diseases. They think they’re the first to tell you. That’s just being human.

    I can see how people could feel that way, I’m just not one of them.
    Blessings, Colleen

  • Charli

    How about all the people who are like, “Have you tried natural medicine? Acupuncture? Chinese herbs? Maybe you should go gluten-free and try a raw food diet!” Ugh.

  • Joseph

    Awesome story and awesome responses.
    I always like the people that say “My neighbors, aunt’s housepainters, friend” has symptoms just like you. Maybe I can get you in touch and you can compare stories”. Um….no thanks. I’m going through enough drama in my own life. I don’t have the energy to Dr. Phil someone YOU don’t even know, let alone me.

    All of your scenerios have happened to me at one point or another, and I’ve only been battling for 3 years.

    My favorite, out of all the “helpful” suggestions I received was to just stop taking my medications. Period. All those pills and chemo can’t possibly be good for me. That’s what’s making me sick. You’re body wasn’t meant to ingest so many toxins.
    Gee…. I guess my doctor must be a real Duh for not knowing that. To think, all those years of med school and she doesn’t know chemo is bad for me. Pisser!
    Didn’t anyone notice I was sick BEFORE I started taking drugs? Why I couldn’t walk or even stand. Why my joints ached and litteraly swelled and got hot to the touch, why I couldn’t breath – like my lung surgeries and removals were just for shits and giggles – why even lying still was painful. Was I invisible all those years before I was even diagnosed?

    And people wonder why I drink. And why I don’t CARE that I drink 🙂

  • Carrie

    Wonderful article! It’s truly amazing how many ‘experts’ can google a disease and suddenly have all of the answers!

  • Cat Buchanan

    My husband the other night told me maybe I should talk to my Dr because “You’re so tired all the time” and “you’re always cold in the winter”. I was very temporarily speechless. I have Fibromyalgia, CFIDS, psoriasis (with psoriatic arthritis), MFPS and a bunch of other things and have been sick off and on since I was 12 (which makes it THIRTY years this year). I told him that these symptoms are TYPICAL of Fibro and CFIDS and he KNOWS I have a difficult time with my body regulating it’s own temperature (plus my “normal” temp is about 97.4).

    I also have had the “you shouldn’t nap” told to me … and from a RHUEMATOLOGIST. The theory being that if I don’t nap during the day then I won’t have as much trouble getting to sleep and staying asleep at night. Uh, I’ve had slow-sleep insomnia forever and figure it’s a part of my illnesses. I also wake up during the night. I ALSO have a 4 yo and a puppy. I will nap whenever I can. At the time this “doctor” told me not to nap I had an early-toddler. Sheesh! That person had obviously NEVER had a chronic illness and a baby/toddler at the same time. Shoot … she probably hasn’t had a child, yet. Everybody who’s had a baby and is “NORMAL” knows that when your baby rests, YOU rest! It’s much more important for a Fibro/CFIDS mommy to take advantage of those times. It’s also important now with a 4 yo who ONLY naps if I force him to lie down with me and the puppy.

    “You shouldn’t take benedryl if you have Fibro”. Really? It has no proven delitorious effect on those with my conditions. And … I have moderate to severe BEE/WASP sting ALLERGIES. I have to keep it on hand especially during the Spring and Summer because taking it as soon as I am stung will help to save my life while I’m waiting for the ambulance. The feeling of your throat closing really is NOT something I would wish on anyone.

    “You should get out into town and not isolate yourself in the house.” Really? Have YOU ever had agoraphobia and Chronic depression or mild BPD? Just getting out of bed in the morning some mornings takes all my energy. Getting out of the house causes tight muscles and anxiety that takes a while to recover from. I can’t take my muscles relaxants WHILE I’m out driving around 20 minutes away from my house in town… It would be irresponsible of me to do so since it would potentially place myself, my child and other people in danger.

    Thanks for the article! I appreciate it a lot!

  • Kelly

    Thanks Steph! This was a great article, wonderfully written! Came at a great time for me, one of my friends has been saying some pretty quacky stuff lately. Thank you for balancing that out! 😀

  • Amy

    OK, a PS to one of the comments: Yeah, I know people say, “Well, I must have _____ b/c I feel like you do.”

    Maybe they do? Suggest, in either case, that they explore their symptoms with their physician to determine if they have your condition or something similar…if they refuse, then tell them you’re glad to hear that their symptoms, unlike yours, are transitory & might be helped by them taking their own advice instead of spreading manure?

  • Amy

    Steph, you brighten my day!!! THANKS!

    Question:

    Ummm…do we really need to say quack when so many doctors act like same? We could be confusing people about whether we’re talking about letting things roll off our backs, or about recalcitrant members of the medical profession who, when faced with a baffling illness, resort to calling patients “lazy” & their illnesses “psychological somatization of stress &/or depression” rather than following their much-lauded “scientific method” & trying to figure out what the problem is…these are “duck farm” doctors (every time they open their mouths what comes out is “quack”). 😉

    OK, I think I’ll sign off now, having created possibly the world’s longest run-on sentence…I’m an English geek & too sick to try & repair the sentence!

  • Michelle

    I love the comment Oh but you look good!! Welcome to the world of invisible illness! 🙂

  • Julie Culp

    Love this article … I really needed a good laugh this morning.

  • Lori

    Great article and topic! I have chronic Lyme, & suffer from extreme fatigue, horrible pain in every joint, muscle, tendon & fiber of my body, insomnia, brain fog, and the list goes on and on…
    There’s nothing more frustrating than these “helpers”. One of my favorites is when someone asks me about my symptoms, and then casually says something like, ” oh I am tired and achy, I must have Lyme disease too!” it is so completely insulting b/c they don’t have a clue of the hell we go through on a daily basis. It makes my blood boil & my mom is the one who does it the most!! I just walk away at that point because I literally feel like one of those cartoon characters with the smoke coming out of my ears!!
    Anyway, love the duck quote!

  • Jen

    Thank you Steph! Coming off a 5 week stretch of being very ill, I needed a good laugh and something to relate to! Well done!!! Good show!! 🙂

  • Bettina

    Great article, as usual, Steph!! My favorite, which usually comes from my husband, is “It’s the STRESS that’s making you so sick”. Oh really? The stress from trying to make enough money to keep our family housed and fed or the stress from not putting a pillow over your face until you stop snoring (evil chuckle) or the stress of trying to live in a world that calls me “lazy” and “selfish” because there are days that I can’t feaking get out of bed? Pick one!!

  • Stephanie, loved the article and really appreciate you sharing it. I think I have the opposite problem, more people who couldn’t care less about my lupus and wouldn’t bother to spend 5 minutes researching anything about it. You’re right, I think most people you’ve run into mean well, but I can certainly see how it would get aggravating after awhile. I love your humor in all of it! 🙂

  • Patty

    I love this!! I have so many “well meaning” relatives and friends that have said these things to me over the past 13 years! I treated myself to a highlight/haircoloring yesterday while enjoying my mocha! Life was great and my mood was too!

  • Love this!! I suppose people are only trying to help but it makes you think that they think we have never thought about what we might need to do to “get better”.

  • Jen Martin

    I love it!!! You are so right on!!!!

  • Sapphire

    Beyond my fibro and arthritis, I am also bipolar with agoraphobia. Yes, life is a joy day in and day out. Years ago I went through infertility, and although we decided not to have kids, got many similar comments.

    Recently, my Mom told me to “be a duck” with my father, who is a source of more stress and issues in my life than I can bear to even think. I am in therapy and with the same psychologist for nearly 11 yrs now. I need to work on the issues with my father, so when she told me to “be a duck” I just about slapped her with my webbed feet. There is a time and place to be a duck and a time and place to not. Emotionally, I need to not do this with my father. If I am a duck with him forever, nothing will ever get better. Maybe I need to be a… gosh, I can’t think of something. I have the fog and need to try to get some sleep – bad night last night. You get the point.

    Like you said, too, with those you have a valued relationship, you can *try* to educate them out of their ignorance, but some will never “get it” (to the point where anyone without our ailments can). I still find it very hard to be a duck. Does anyone else have a hard time with this – where they are sensitive and take comments very personally, wanting people to stop being so ignorant for so long? If they could at least accept something and not try to fix it or change it… I’d take that!

    Thanks, Steph!!!! Many blessings to you and fellow spoonies!

  • Heather

    ROFL! If you want to see my head spin around try taking my Diet Pepsi! Sometimes that’s the only thing that keeps me functioning.

  • Carla

    You have no idea how I wish I had the brain power to be able write like you do. Since getting sick, I’m the one who thinks three days later, why didn’t I say that? It takes me that long to come up with a response. I love how you always seem to know the perfect thing to say. It always gives me a laugh or two in a life that sorely needs that laugh. Keep on writing so I can keep on laughing! Thanks

  • Love this article! People DO mean well, but then there are others ….

    The worst offenders, bar none, are those who are actually selling some miracle device, magnetic mattress pads, crystals, copper bracelets, and of course magical vitamin supplements that you really MUST buy now that you’re sick – some sold online by celebrity with the letters M.D. after their names.

    It’s insufferably tacky to push these miracle cures onto those who have likely already looked into every possible treatment, snake oil or not. It’s even worse if you are actually selling them and making money off your sick friends and neighbors….

  • Lilli

    LOVE IT!!! The best is when I’m told to “snap out of it”, or if I got out more i’d feel better!! ROFL… Or when, like me, your in a diagnostic spiral because you and most doctors know you have lupus, are treating you for lupus, the treatment is helping, but some insignificant test is still negative, or you don’t (gratefully)have organ involvement… So then, when you’re not feeling well, you’re told by the “well-meaners” “but didn’t the doctor say it’s not lupus?” NO IDIOT…
    I give up… I don’t even talk about anymore to anyone unless they have a chronic condition because they don’t understand… and quite frankly, after 5 minutes, they really don’t care….

    And steph – I totally agree with Terri! I know immediately when it’s your writing by the first paragraph!! You leave a bond with some of us… it’s crazy!

  • Amy

    Steph, Thank you so much for sharing that. I say this as I end yet another sleepless night and wipe away the tears that fill my eyes as I watch yet another sun rise. I don’t have Lupus, I have Crohn’s Disease. The nuggets of concern I receive are of a slightly different nature, but they are no less frustrating. The next person to tell me that if I would just eat a healthy diet I would be free of Crohn’s ….I don’t know what, I’m too tired, but you catch my drift. I don’t eat gluten, dairy or red meat and I am still sick. Yet another misconception that Crohn’s only effects the digestion. But I digress…..I just wanted to say thank you.

  • Babushka

    I just love it when folks say, “maybe you should get some rest.” Rest, that’s all I do! It should have worked by now. I’m reporting this to the FDA. How dare they tell me it will completely eradicate my disease.

  • Dianne Breamer

    I love how you put all our thoughts into words. Thank you for that!!

  • Steph

    Wow….that may be one of the most amazing compliments I have ever received, Teri! Thank you 🙂

  • Ann W

    I had to stop talking about how i feel…. My Hubby and I have become legal guardians of our grandaughter, I I don’t need the stress of what people might say. (“how can you handle a 2 year old?”)She needs us, and we (in our 40’s) make the adjustments to have her here, safe, living with us. I take naps when she does, and we read when I need to sit quietly. I’m so glad I can share with the few friends I have who understand that I am NOT my illness, I am smart enough to adjust, and I will take care of what i need to so I can take care of her! I’m glad I found THIS site!

  • Teri Kennedy

    Steph, you are too good! I loved this article. I can tell from your articles and sharing of yourself that you and I would make fast friends. We share the same last name by coincidence but I swear I wish you were my sister! I like how you think, I am in awe at your ability be able to work, be a mom, and a wife and still find time to be a fully engaged member of this website. You are my “idol” and give me incredible inspiration and joy! Thanks again!

  • Sharon

    Yup, QUAAACKKK! I’m a post-multiple-stroke surviver, with fibro and arthritis and asthma and…and… and even my mother floods my ponds with this *&$^%. I’m 50 now, she began the fibro journey at 50, I had my first stroke at 25, fibro before 30, diabetes by 34, PEs and DVTs in my 40’s…. Now if I go to a friend’s house while party preps are happening and she made some home-made whipped cream, she takes it out of the fridge, makes me smell it, look at it, then when I get a spoon out to try it, she shrieks and covers it up quick and puts it in the fridge saying I can’t have any cause it will mess up my blood sugar! This after I had said I hadn’t had anything to eat yet for the day! Oh, that would be bad for me! Too bad I didn’t know to QUACK at her then! I WILL, however, remember to do it in the future!

    Thank you for posting your great posts – while I rarely post back, I am always appreciating those posts that I see. You are an encouragement in the day-to-day fight for survival and life in whatever “normal” we can achieve. <3

  • Chrystal Cahill-Baker

    Well Well Well ..> QUACK QUACK FRIGGING QUACK !!!
    After sleeping barely 3.5 hrs and wanting to just curl up into a ball from pain (pincushion day Tuesday) and wishing it really was ‘just a frame of mind’ I must say this was a much needed read & over due giggle !!!
    Thank you for the humorous words & truth be told, not all of us can be ducks all the time but most of us (if not all @ one point or another) have been known to QUACK upon occasion even if its to keep our sore butts outta the loony bin (cracking under the pressure from another ‘all knowing’ soul who just has our supposed best interests at heart)
    THANK YOU and QUACK A QUACK to everyone <3 Cheers C.

  • Heather

    “Be a duck.” ROFL!!! I have been saying that to so many people lately and now I run into it here! Your friend is so right! I’m the spoonie and I’m telling my sister (who’s not officially a spoonie, but I’m beginning to suspect …) to “be a duck.” I’m telling my husband to “be a duck” when the people at work get on his nerves because they say one thing and do another. I’m telling a teenage girl at church to “be a duck” when adults get her down because they don’t practice what they preach. Chelle is right – the secret of life is to BE A DUCK! 🙂

  • kal

    some people especially teachers and others working with my teen say it as if it is because of me… I dont take her in the sun(which the medications do not permit and it hurts her eyes)and that is what her problem is and that is what is causing her auto-immune disease. I too have an auto immune disease and I am a single mom who chooses not to date. A co-worker once told me the only thing wrong with me is that I had no sex life. My other favorite is that my symptoms would disappear if I lost weight.
    Some people need to loose their self righteous attitude toward others with disablities.
    So I will not be self righteous in dealing with people who are not ABLE to see past their own nose. You know, those whose limitations include being unable to have heart, be supportive of others, and encourage their sudents with positive input rather than contempt.

  • Colleen

    My problem is fibro, not lupus, so while exercise is still important, it’s not as essential. It has to be chosen carefully. I’ve had people suggest I take up jogging (yeah, high-impact feels REALLY good!), take up horseback riding (yes, you read that right – horseback riding!), and the one that has some validity to it but still makes me want to strangle someone – take up yoga. With my balance, I’d rather work with a stretching partner who’ll keep me safe than go to a yoga class where I’m likely to break an arm or leg. Yes, I walk into glass doors, too! Contorted positions, uh, probably not such a good idea!

  • Nursenancy

    My favourite was “Why don’t you get all your teeth pulled out? There can be germs under your gums and your fillings poison you”…!!!!
    Quack, quack, quack 😀

  • Maureen

    I love it when people mention that exercise would make me feel so much better. They don’t realize that one flight of stairs can cause me ro totally shut down!

  • Tracie

    This was awesome to read. I will be sharing it around to other spoonie friends (on the odd chance they haven’t seen it here already).

  • ann

    A “friend” who recently discovered the gluten-free lifestyle just couldn’t stop telling me how great it was and how it would cure all that ails me. I told her over and over and over and over and…you get it…that I already did an elimination diet way before it was trendy and that while yes, I’m allergic to wheat, no, I don’t have an overall problem with gluten. She wouldn’t let up. She finally said it one more time, in writing. So I let her know, again, in writing, that I was sick of hearing it and already knew it wasn’t my issue and and already seeing 57 doctors including a Bastyr trained ND and surely one of them would have mentioned it if they thought it might be a problem. She was shocked and horrified and offended and was “only trying to help.” I would have totally bought that line if she’d heard me the first time. Or even the second. I’m not very good at being a duck.

  • Brittany Roop

    I literally laughed out loud as I read this, due to the fact I hear this NUMEROUS times a day from friends and family.

    After having a lousy day, this totally did the trick of just having a good laugh to myself. 😉

  • Yeah, I try not to be an overeducated snot most of the time, but when people try this *$%! on me I admit that I do pull academic rank on them. “Well, I’ve been studying and researching this field for the past ten years through one undergraduate and two graduate degree programs, and I really don’t think that avoiding [insert normal but for some reason highly toxic to trendy people food here] is going to help me.”

  • Gail Ruff

    Stephanie,
    I didn’t know if I wanted to laugh or cry at your responses to ‘helpful suggestions’ on how to manage your terrible terrible Lupus. I’m so sorry that you or anyone should have to endure such a thing.
    I got RA in 1978 when I was 34 years old, (no, Idontlooksick)and it sounds like the two of us have been on many of the same medications throughout the years. Fun side effects, huh? I also have Osteoperosis (thank you Prednisone), Osteoarthritis, Fibromyalgia and, as some Rhuematologists have stated, “Lupus tendencies” (whatever that means). And, I believe we’ve know the same well-meaning friends with their lack-of-fact-based suggestions. The five white raisens soaked in Gin was my favorite, the Gin made me not care if it worked or not. Your very clever writings on this subject have given me a good laugh for the day. Thank you so much.

    Oh by the way, if your doctor hasn’t told you stay away from alfalfa tea, it can cause a Lupus flare-up*. Alfalfa tea was a surefire cure-all given to me by one of those well-meaning friends that I was foolish enough to dive into with great enthusiasm, only to land on my back yet once again.

    I have the only REAL solution for chronic pain, get a dog. They’ll keep you company on those suicide-fantasizing nights when the rest of the world is sound asleep. I have four! LOL!

    God bless, and sleep when you can.

    * Stated by two Rhuematologists after the fact, unfortunately.

  • And oh! Another thing that’s bad for you besides dye, meds, alcohol. LUPUS!!!! SHEESH! No wonder I have been avoiding people. lol.

  • Chelle

    Let it roll baby! Let it roll! xoxo

  • Steph

    Thanks Sheila! That pic is hysterical!!! Thanks!

  • Oh, in case you miss it there, click on this. http://www.twitpic.com/3r99ci

  • love THIS! Thanks for sharing it! I have the cutest picture that you would love for when you want to scream “QUUACCKKK”! I’ll send it to you through twitter. I’m Penlady there. Fellow lupie and spoonie.
    Sheila/Penlady