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.
©2024butyoudontlooksick.com
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  • William

    Yikes. Half of your suggestions basically advocate letting you do something that’s twice as harmful to someone whose health is compromised because their health is compromised. (???) If you’re looking for some sort of approval, I doubt you’ll get it from anyone who doesn’t agree that a state of suffering is an excuse to abuse the self.

    “I’m so sick that selfish or harmful behavior is appropriate and caring is to be interpreted as spite and arrogance.”

    I’m sorry, but that’s the worst advice I’ve ever heard.

    That’s over half of your argument. “Let me drink/use (PERHAPS harmful) chemicals/whatever, deny there’s any harm because you’re annoying me, not because of any facts I’m presenting, and shut up and leave me alone.”

    Brilliant.

    I truly suspect the person you’re mad at is yourself, or at your health, for being in a state where you feel so sick you don’t even care how much more harm you do. And then you resent people who care about you for speaking up, and demonize them to perpetuate the behavior.

    This post is full of resentment and anyone that encourages this mindset is only doing themselves and others harm.

    I truly hope you find peace in your suffering, as I continue to look for it on my own, but this is not the way to go about it.

  • Haha very interesting article!

  • IAdler

    Just found this site, through The Guardian, it has made laugh all afternoon, I actually just had a quarrel with a date a couple of nights ago because of those dreaded phrases…: “But you don´t look ill at all!” and the lovely “You just need to change your attitude, try /yoga/pilates/shark diving/ etc/”. It has been a huge relief to read these posts and comments!

  • Robby

    I had a “dr” (term used loosely), tell me that there was nothing wrong with me, that fibro does not exist, and besides only women can get it, and that I just needed to get off my lazy a** (yes he said the a word), and do something.

    I LOST it, the Entire office heard me yelling, especially when I told him the only thing wrong with him was that he thought he was a dr, and he just needed to get off his stupid, heartless, uneducated, sexist, a**, stop trying to be something he would never be and go back to whatever rock he had crawled out from under. Then as I walked out the receptionist tried to stop me because I needed to pay my bill, I told her I had not received any services from a dr, therefore I would not be paying. I went straight to the administrator of the hospital the office was connected to, the next day it was announced that “dr” was leaving. It seems the admins wife has fibro….lol

  • Conny

    I wish I had the problem where my family cared to even look up an article. But they DO say many of those things in a very hurtful way. I wish I could say it was out of love.
    But the worst 2 were from an acquaintance and an SSD worker on the phone after I was informed after 5 tries I now have to wait for 12 to 15 months to see a judge. I have Lyme and such and so you can imagine the trouble with them, but anyway:
    1. You are so lucky to have that Handicap Packard!
    I was uncharacteristically speechless!
    2. We know you are disabled, but you are too young (46) and you still have a brain, so we can not say yes to your disability again. Is there anything I can do I ask, Yes we have to wait for the judge.
    So for the 2nd year now since cobra ran out, I have been without ANY medical insurance.
    This just really ticks me off and popped in my head!! I get billed hundreds of dollars more, just because I am un-insured, compared to what the insurance companies pay for the same services. That is price fixing and is illegal, but I cant try to fight that one when I am trying to fight SSD and Lyme and all those people you have all referred to. Because they are that way when they love you? Imagine how they are when they don’t even know or care about you, like those nurses (Take No Offense PLEASE)!
    Sorry got into venting,
    Conny

  • Lisa

    LOVE this article! I suffer from autoimmune illness among many other conditions and am sick of people not understanding, or at least TRYING to. Everyone seems to have a simple fix, try this, try that. Well, I have tried at ALL. I unfortunately have to take enough pills a day that Dr.’s can’t believe I can still walk and talk.

    I may look good on the outside, but suffer every minute of every day inside. I am so sick of hearing: “Oh, when the weather is nicer, you will feel better.” Maybe when the sun shines it helps my spirit, but it does not miraculously CURE me.

    There is so much stigma around ‘invisible illnesses’ and it angers and frustrates me. I am 38 years old, in the body of a 88 year old. My Grandpa is 89 and healthier and more able than I am.

    My reality is that I have to ‘save’ my energy to do what is most important. I have to use a cost vs. benefit attitude.

    I explain how I am feeling to others like this: Try to imagine how you would feel if you had to run a 25km marathon, without any training, with no sleep for a week and with the flu. THAT is my reality, each and every day for the past six years.

  • mandy

    ok I have had everyone of those said to me but the wrost thing ever was no a helpful thing but a friendly pick me up that just hit me the wrong way. “Well Mandy you look so good no one would ever know you HAD been sick at all” Had?? Um when did I get better?? I fake it like most of you do, slap on the smile and act like I’m ok. But this I just didn’t like.

  • StephJDMsurvivor

    My favorite is when people who have never been on prednisone talk about how wonderful it is. Especially when I know the last person who gave me this speech would have a mental breakdown over the physical effects alone!

  • QUACK!

    I have more mental disorders than physical, but Ill know exactly where you’re coming from.

    “You’re BiPolar, you shouldn’t be smoking weed!” Um, screw off dude. It helps my chronic pain, anxiety, paranoia, anorexia, and sleep disorders.

    “You don’t sleep at night, why are you drinking so much caffeine?? That’s why you’re awake all night!” Um, no it’s not. It’s the ONLY thing that keep me slightly functioning throughout the day, dickweed.

    The “advice” I hear the most is to check myself into a mental hospital. Not for a week- for GOOD. I have BiPolar 2, Body Dysmorphic Disorder, Borderline Personality Disorder, Anorexia, Bulimia, Panaoia and Anxiety, as well as Scoliosis and Fallen arches, and chronic headaches, dizzy spells, irregular heartbeat, and racing pulse. And i’m DEALING with it.

  • Leilani

    I’ve actually had a doctor follow me in to a waiting room (with 2 other patients in it), and tell me that all of my problems were the result of me not having a good church home. If I could just find and settle down in one church, then I wouldn’t be depressed anymore. Turns out I was depressed because my brain couldn’t make serotonin anymore due to SEVERE hypothyroidism. I was dx’d less than 2 weeks after seeing him, and was told that in another 6 months, I probably would have been in a coma from it, my levels were so bad.

    I recently complained to a (new to me) doctor of severe pain just behind the curve of my jaw for the past 2 months, and taking a Vicodin barely helps with the pain. After he wrote the wrong presenting complaint on the MRI order, making the radiologist look at the wrong part, the report came back that there was nothing wrong. So the doc’s response? “Try taking some Aleve if it hurts. It should go away on it’s on.” Seriously?!? It’s been more than 2 months already, hurting to the point that I can’t talk, eat, drink, or swallow, and Vicodin doesn’t help, and you think a little more time and Aleve will? Where on earth did you go to med school?

    I love being able to come on here, and know that other people have experienced the EXACT same thing as me, understand where I’m coming from, and believe me. Thank you so much for creating this site, and for the awareness you try so hard to bring to the world, for all of us!!

  • ana rabade

    From a CFS girl : Quack ( translation to the feeling deep inside :Ouch!). I would really like to quack more often! Thanks for this page!

  • Cyndi

    Oh, I appreciate this article SO much. I have had RA since I was very young (maybe third grade). Every summer my husband and I, as well as a neighbor couple would host Japanese students in our home. One summer just before I entered nursing school, we decided to host a going away dinner for our students, several of the teachers, and the neighbors. My neighbor felt I was an idiot to attend nursing school with RA. During a lull in the conversation she decided to share this with everyone at the table. “What are you going to do,” she asked, holding her hands in front of her as if they were lobster claws, “Say, oh nurse, can you give this shot for me? I can’t seem to get these hands of mine to work.” I was shocked and hurt to tears, and my Japanese guests were horrified. I can’t can’t even remember how I got through the rest of that night. All I can say is, hey Tammy, if you’re out there, it’s been 22 years; I now have my Master’s and I give a d*&n good shot. I’ve progressed; stupid lasts forever. QUACK!

  • Diane

    I just say something like “yeah, I tried that in the “70’s” Sometimes that shuts them up, other times I suggest it. LOL

  • Gill

    Hi Folks
    I live in Northern Ireland and have ME Fibro & Depression. Some Docs here still don’t believe ME even exists even though the World Health Org say so!
    I wrote an article for the NI ME Assoc Newsletter about the stupid thinks people say to us and everything in it is the same as what people have posted here!
    I think its bad enough when strangers comment but when your own family says things that really hurts.
    You shouldnt sleep so much, you should just try harder, you should exercise blah blah blah, one friend even said to me your not really disabled are you, your just not feeling well!!!
    At least we can vent on boards like this so we dont feel alone.
    Great article!!!

  • Claire

    I have the opposite problem. The one in the title of this website. No one seems to accept how hard things are for me.

    I have Hughes but other than having to inject in pregnancy people don’t see it, most of the symptoms I have are silly ones I don’t discuss.

    I have Raynaud’s that’s got worse in the last few years, people don’t understand why I don’t like to go in the freezer.

    I have PGP and use crutches but only outside and only if I’m going to be walking a lot, if I’m in and out of the car I don’t bother. So because I don’t use them all the time I don’t need them – right? I get stick because I don’t iron (would you want to risk collapsing in a heap with the iron in your hand?) I get stick because I won’t use a pushchair (but then I’m a big believer in traditional slings, Mum said I used them with the first by choice but she can’t understand I’d still make that choice!) I get stick because relying on the crutches and saying I have long term PGP is not relying on God to make me better – He might do one day, but until then He’s made it possible for it to be treated and I’ll take that. Mum broke her odontoid peg so that makes her the expert in having back problems. She’s managed to overcome what they said and not allowed it to hold her back, so why should I?

    I’ve just been told I have fibro too and I don’t want to tell Mum because I don’t know how she’ll react to it. They’ve told me that if I wasn’t on crutches for PGP I’d have them for fibro.

    Mum means to be supportive but she doesn’t understand. It doesn’t help my HV (apparently) has told her that PGP goes within 6 weeks of birth! My CMW wasn’t impressed.

  • Topanga Jane

    I loved this article… it was just what I need to read today.

    I have Lupus and it seems like ever since I was diagnosed with it people have been trying to be my doctor and I mean EVERYONE….. I have heard so many things it makes me crazy. I have a hard enough time resting and sleeping, but to have all these people in my head at night drives me crazy. My favorite comment is when I get asked, “so are you over your lupus yet?”, like it is a common cold that should go away in a few weeks. And when I reply no they say, “Well when do you think you’ll get over it?”…. Really…. no but really. Like I am doing this all for fun and by choice. Or my favorite is when people tell me how hard they are taking me having Lupus and how it hinders them. Try actually living with the disease and feeling the pain and dealing with all of the symptoms.

    I know they mean well, but what about our feelings on the whole matter. Also if it bothers them so much stop asking me about it and for updates every conversation that we have because I don’t always just want to talk about Lupus. I live with it and that is enough for me. I even had a few people tell me that if I prayed more, went to an American RA, or do holistic healing… I would not have to deal with Lupus anymore or wouldn’t have been diagnosed with it. Ya, cuz my blood test that came back positive must have been wrong too and means nothing. Your right it must be in my head.

    Forgive me for spilling all of this but it’s nice to know others have the same frustration I do. I was starting to think I was going crazy. In fact I just found out I was pregnant and someone started to give their doctor advice and I looked at them and said….. Thank you so much, I mean do you mind being my doctor from here on out because it would save me allot of money and trips getting my blood taken. In fact while you’re at it maybe you could deliver my baby so I don’t have to go to the doctor for that either.

    Ok maybe that last on was a little hash, but sometimes after all the suggestions I can’t always be pleasant. Especially when I didn’t get any sleep the night before and feel like crap and my hormones are raging.

    So thank you Steph for this article and thank you to everyone and there responses they keep me going.

  • Carole

    I get the sleeping too much accusation all the time, from my family and my spouse. Do they really think that someone would rather sleep their life away just because they’re lazy? Well, they do think that, but it just doesn’t make sense. From someone who used to live life to the fullest and was an energetic, or hyper kid, as my family would say, sleeping so much is not a choice I make. I can have a complete stranger in my house and not be able to wake up, even though I’m aware he’s there. Yep, happened twice, a floor installer who had to work around me sleeping to measure, and my realtor.

    And the meds, well, I’m just a pill popper. I eat pills for breakfast, lunch, and bedtime, but it’s all just because I love taking all these pills and killing my liver. I’ve heard most of these, if only I didn’t listen to myself so much, got out and walked, exercised more . . . blah blah blah. Fools.

  • Lucky

    I am having a particularly bad pain day, so I am so glad I stumbled upon this site. I don’t have lupus, but I have chronic pain from fibromyalgia, spine, and nerve conditions.

    Lately, I have been getting so frustrated with people telling me I am going to get addicted to my pain medication. I have been taking the same medication for years, so I’m not sure why they think I will get addicted all of a sudden. Moreover, I am tired of people asking me if I have tried homeopathic options. I suffered a bout of liver disease in the past, so I am not willing to try supplements that aren’t FDA regulated, unless my doctors specifically suggest I take them. (For instance, I do take Fish Oil because my doctor recommended it, but I’m not about to try witch hazel.) I just don’t understand how people think they are helping by dispensing unwarranted medical advice.

  • Diane

    To Jennifer Mc: I’ve gotten the crap about pain meds and being ‘addicted’ from former doctors and my husband of nearly 19 years. I’ve had fibromyalgia and chronic migraines since 13 and 15 respectively, but was treated for RA until I was properly diagnosed at 30. And the docs could never understand why the anti-inflammatory meds they gave me never worked. Imagine my shock to learn that a single blood test could have ruled out RA and nobody ever thought to give it to me. I was basically disabled for 13 years while my kids were young; slept all day while they were at school, endured daily pain, migraines that lasted days, and profound exhaustion. Less than 2 weeks before we moved from CA to AZ I finally got in to the Stanford Pain Clinic. Two doctors went over my medical history, did some tests, and when they finally sat down to talk to me about a treatment plan, one of the doctors leaned forward, put his hand on my knee, and said, “We believe you”. I burst into tears! They couldn’t treat me because we were moving, but they wrote up a treatment plan for me to take to my next doctor. That’s when I started on Oxycontin, Percocet, muscle relaxers, anti-depressants, and meds to help me sleep. I could work for the first time in 15 years and loved it. All was well and good until, as I’m sure all of you know, I began building up a tolerance to the narcotics and needed the dosage adjusted. That’s when the ‘addiction’ word started getting thrown around and I started getting ‘those’ looks. My own doctor didn’t seem to know the difference between addiction and physical dependence. I got pissed off and told her that a diabetic is physically dependent on insulin; does that make diabetics addicts? If I stop taking my anti-depressants I will go into withdrawal, does that mean I’m addicted? I’ve spent years being treated like a hypochondriac, a drug seeker, and an addict by doctors, pharmacists, and family. My husband, who is on disability for heart disease and many other conditions, keeps his medications in two plastic shoe boxes and thinks I take too much medication. I take my meds exactly as they are prescribed. I WISH I got high from my medication!

    To Beth Worley: I have gotten the, “If you pray and trust in God, he will heal you”, mostly from my mother. I finally told her, ‘Mom, it’s been 34 years. I guess God said no.” This is the same woman who spent years telling me I should forgive and pray for my father who physically and sexually abused me. I finally decided that, as he has never admitted what he did nor shown any remorse, forgiveness was between him and his maker, and cut him from my life along with my negativity-spewing mother and a cousin with Crohn’s disease who stole all of my pain medication while I was at work (19 days worth) knowing what it would do to my body.

    To Helen Partridge: I think our husbands may be clones! And I too often wish he could spend a day in my shoes so he could understand what its like to live in my body.

    To Stephanie: Thank you so much for putting a smile on my face and putting into words many of the ‘helpful’ advice we get from people who are by and large clueless. The hair dye one made me laugh, because I’ve been debating coloring my hair again. I decided a few years ago to quit fighting the brassy red highlights in my dishwater blond hair and went auburn instead. A friend kindly gave me enough dye for 2 years, but I don’t color often because it is often painful to raise my arms for any length of time. After getting my hair cut in November I’ve noticed this cool white streak growing over my right eyebrow and if I part my hair on that side the streak looks kind of cool. One of my aunts had that streak and it looked good after it grew out completely. HOWEVER, last night I brushed my hair straight back into a ponytail and the white streak went straight down the center of my hair… I looked like a skunk! So I guess I’ll brave the dye seeping into my brain. After all, with fibro-fog anyway, who would notice? I also get the not enough/too much sleep comments. It takes 2mg of Xanax for me to sleep through the night, and a lot of times even that doesn’t work. Sometimes I’m awake for 2-3 days at a time, so I take my sleep wherever and whenever I can. Steph, you are a treasure to me. I can always count on you to tell it like it is with a twist of humor, and I need that some days. Thanks for letting us know we’re not alone.

  • Yesss! Thank you so much for writing this 🙂

    You gave me a good laugh and I could relate to a lot of it.

    I don’t have Lupus but I have Polycystic Kidney Disease and Epilepsy and I shake my head and sometimes my fists and the things people say lol

    *quack quack*

  • MiniMorg

    My mum just suggested to me tonight that I should go and be hypnotised to get rid of my pain ><
    Yes thats right. Hypnotised!

  • Claudia Garcia-McIntosh

    Oh HAPPY HAPPY JOY JOY- (I’m guessing you may be familiar with Ren & Stimpy) You put into words things I think on a regular basis. In fact there’s a beloved family member who is into Naturopathy that thinks ALL medical conditions can be overcome through mind-over matter that I;m sending this too. I love her dearly, but she’s completely oblivious to the fact that phrases like “You will be well when you’re ready to be” are not only hurtful, but downright insulting. I mean really, do people honestly think that we would CHOOSE to life a life filled with pain and fatigue? Like we woke up one morning and said, “Oh gee, I think I ‘ll will myself into an autoimmune disorder so I can get ______ (attention, sympathy, whatever)Another person stopped speaking to me because I did not agree that my RA& Fibro would be cured if I went to her 12-step meeting! Louise Hay may have done wonderful things for some folks, but for those of us with real illnesses, we need real medicine, not a bunch of positive affirmations and daily shots of wheat grass! And lets not leave out the narcicist who confided in me “Oh I wish I had arthritis”-this statement was made after a fellow co-worker said something about admiring my cheerful outlook and unwillingness to constantly snivel. I know I should not be so surprised, but human stupidity never ceases to amaze me, I’m 100% positive that humor and upbeat attitude are essential tools in our arsenal against these crappy disorders, so may I raise my can of Red Bull to toast you! Hear, Heart!! Long live Sick Humor and the folks who are intellegent a brave enough to share it!

  • I can not tell you how comforting it is to read about all the “help” ya’ll have been offered so freely. I’m sure you all at one time or another have started to wonder if you were the crazy one because there isn’t anyone around that isn’t doubting or condemning you in some way. Thats what I hear in these “suggestions.
    I have had my husband and sisters(nurses!) tell me that it’s all in my head because I crave the pain meds. Have they lost their minds? Those 2 little pills make it possible to get out of be without crying(most days). There is no “high” involved. As nurses you would think they would know the facts involved in the body’s use of these chemicals. Basically, if there is pain the chemicals attach to the pain receptors in the body. If there isn’t pain, the chemicals have no receptors to attach to so you get the “high”. And why would anyone take chemo, anti-malaria, etc just so they could take 2 little pain pills that give you none of the usual drug seekers’ benefits? Then ofcourse there is always the “exercise more and you’d feel better”, “you know its caused by the artificial sweeteners in your diet drink”, “your Dr. is crazy and its his fault for putting you on all these meds that cause all your problems”, ” your Dr. is crazy- he diagnosis all of his patients with the same type of disease!” That last one is truly my favorite. Who would ever think that a Rheumy would diagnose his patients with auto immune diseases? hehe
    The best insult of all times has to be from my nephew. He and his baby-mama and baby had camped out at my house for 2 weeks. I made several trips to town with my nephew, fiance and baby over the last week without any problem. Ofcourse during that period I was handling any money obligations that came up and he had no problem with me driving. The last day at my house we were packing up for a road trip that took about 2 hours.(My Grandfather’s funeral) As we were walking out the door, he asks if he can drive the big truck. I said no, I am driving my truck. He then informs me that he isn’t comfortable with me driving his child. He will be driving. My truck. He has no truck here. This 20 yr old, no job, no school, drug running punk tells me I’m unsuitable to drive his kid. I’m 41 years old with 2 kids of my own that will be in that truck. Unbelievable! I would NEVER drive if I was unstable or foggy. I let him take the truck to avoid a fight and I drove another by myself. When I told him after the funeral that he needed to get another ride to the airport because I was unacceptable to take him the entire family was mad at ME. I was being unreasonable. In the end, my husband got up at 4am to drive them 4 – 5 hours before starting his 12 hour shift at work. The irony of it all is that after they left I realized an entire bottle of percocet was missing. My mom and dad were the only ones that stood beside me. They are the only people in my life that prevent me from being done with it all.
    People don’t realize the pain they inflict comment by comment adds up to an unbearable mountain.
    Thanks for letting me ramble. Sorry it was so long. This site is a God send. Thanks!!

  • Gail Ruff

    To Cat Buchanan; I hope you fired that incompetent Rhuematologist that told you not to nap! My Rhuematologist recommended this website. He says he tries to understand. God bless him. (I’ve had RA and FM for 32 years).

    Sue, I love the ‘accusation’ of anger’! That’s a good one. Or, .. . . “do you think you’re depressed?” yet another accusation that this must be my fault somehow. Hell yes I’m depressed, I have several catostrophic, disabling, crippling, and incureable diseases that have tried to ruin my one-and-only shot at life! AND I’M ANGRY ABOUT IT!!! Gee, are we suppose to be cheerful on this website, I didn’t really read the rules thoroughly? LOL.

    On a lighter note: Is anyone having trouble with pain pills and nausea? (I bet, most), nux vomica is a huge help. It’s an herb and doesn’t conflict with medications (but look it up in an herb book). Four tablets under the tongue with every pain pill. You can get it online. Also, try taking just a half a pain pill. If it doesn’t work in 30-40 minutes take the other half. And, of course, we all know to make sure you have a full stomach first. Oh, yes, and the subject of pain pills always brings up a lot of speculation about pill addition, doesn’t it? Thank you movie stars.

  • Thank you so much. You said what I feel but have not been able to put into words.

  • Tiffany Trummer

    I have been battling depression since I was 12yrs old and Fibro since I was 19yrs old (diagnosed). I am will be 39 in July. I have other issues, bad back, knees, among others. I have been given the whole shpeel about everything for caffeine ( I can drink a whole pot of coffee in the morning, which I often do and still be ready for a nap by noon) to sleeping too much, poor sleep habits. Oh you need to loose weight to feel better, oh wait you can’t really do a whole lot… okay we will just give you a gastric bypass. WHAT!?!?! I am like what possibly 75# over weight! I DON”T THINK SO! I watch what I eat, when I can eat, and I make sure I do some exercising even if it is just walking from one side of my house to the other here and there through out the day. I got the if you weren’t so fat and lazy… oh heck no he didn’t go there! SO what if I didn’t get the dishes done. They will be there unless you want to do them… didn’t think so.
    I get nasty looks when I am at the store, because I can not walk without leaning on my cart, or HEAVEN FORBID I drop something because my hands don’t want to work… or I loose strength in my legs I trip/fall or back burns so bad I have to sit on the floor to stretch it out…
    I AM SO TIRED OF BEING TIRED, HURTING, BEING DEPRESSED, YOU NAME IT… I JUST WANT TO YELL “IF YOU THINK YOU CAN DEAL BETTER THAN I THEN BE MY GUEST! WHY DON”T YOU ENLIGHTEN ME”! and no not just for an hour or two, or a few days, try years… sure you get used to a certain type of pain but then just when you think you can breath easier, BAM! something new creeps up!
    And my ins… don’t make me laugh! I now do not get any help with things like braces for my ankles which are so weak I keep falling and twisting them… or even TED hose, yep I am 38yrs old and I wear TED hose, those help with my leg cramps I get sometimes that is… but hey it is worth a shot because nothing else works.
    I am sad to say that we have a website/s out here for people who suffer what we go through. I wish it wasn’t so, but it is a fact and we should not be ashamed or ??ed to death or made to feel like outcasts. My own brother says because I am on SSI I am on welfare… TRADE YA!!
    I have shared your story time and again on my facebook but never commented because well because I didn’t realize you had an area to post, when I first came across your site…
    I find your wit refreshing and LOVE your comments and others as well… YOU ARE ALL GREAT!! well time to take my meds and try to get some shut eye…

  • Beth Worley

    The thing I get most irritated to hear is that if I were to just pray hard enough God would heal me… Huh?!? I have to wonder what the heck these people are thinking when they say this to me, and can’t ever think of a good comeback, so usually just end up turning my back and walk away from them. I figure until they walk a mile in my shoes, they have no right to be telling me crap like that, so I’m not even going to respond back…

  • Lynne Bruner

    I was told today to not miss work unless I really needed to. They are watching payroll like a hawk and if I miss too much it is going to send up a red flag. I simply replied “I am doing my best”. This is the first time they have said anything and I have always turned in my PTO. of course I am nearing the end of my PTO and I have to take at least one day a month for my infusion. I just thought to myself if I had control over my body I wouldn’t have lupus! I really needed to hear this today. It is soo comforting to know I am not alone!

  • You were right – LOVE IT!!! And, 10 MaMA Points for using “Gorilla Glue” in the article :p [thought i was the only one who could sleep 2 days after 3 days with none … i love you for putting it out there <3 <3 <3 ]

  • Sarah Lou

    Brilliant. That last one has been said to me so many, many times. “You shouldn’t stay in at the weekend, you should make an effort to go out, and be more sociable.”

    Guess what, right? Sometimes I bloody well don’t feel like it!

    Thanks for a fantastic website 🙂

  • Melody Ream

    I have chronic diffuse interstitial lung disease from having lupus. I use supplemental oxygen so I don’t turn blue and fall over.

    One day in Wal-Mart I noticed a middle-aged woman staring at me. It seemed like everywhere I went in the store she was there also. Finally she stopped me in the produce section and asked, “Aren’t you afraid of getting addicted?” At first I didn’t realize she was referring to the O2. She got the “stare” for probably 30 seconds after I realized she was asking me if I was afraid of getting addicted to oxygen. My only response to her was, “I’m no more addicted than you are.” I don’t think she figured out that she was breathing oxygen as well.

    I am 35 and get those looks when I’m in public. I also had a Wal-Mart door greater ask me if I stopped smoking. I had to ask her to repeat her question because I was lost in brain fog that day. So again she asked me if I stopped smoking since being put on oxygen. I’m not a smoker and never have been. My answer to her was, “Guess not, since I never started.” It’s amazing what people assume.

    I truely enjoy reading your posts. And like so many others I could see us being sisters. Thank you for your encouragement and wit!

  • Jenny

    Great article, some people are so ignorant and I think all of us have had to deal with them way too often unfortunately. My own family has told my parents “you’re daughter is so ill because you didn’t pray hard enough”.

  • SheWolf

    “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. ”

    This is the best description I’ve ever heard… thanks for that, and for the humor. Great article. I am proud to say that after several years of concerted effort I have trained my family to understand that I need their support and not their suggestions – even Mom! But acquaintances, co-workers, in-laws… not so much. My doctor told me, “never read in bed, the bed should only be for sleeping.” Reading in bed is one of the true joys of my life, comfortable mindless entertainment!

  • Amen! My husband constantly tells me I’m on too many meds and that I need to get up and walk. I walk when I can and I ride my exercise bike. I teach a yoga class twice a week. I’m doing the best I can. I wish that just one day he could live in my shoes so he would know how just how awful it is. I know he loves me and is just frustrated that he can’t “fix” me, but really. After watching me take years of chemo, steroids, pain pills, anti-rejection drugs, etc, etc. you’d think he would have a clue. I’m going to make him read this article. Thanks for writing it.

  • Yes. Yes! YES!

  • MiniMorg

    LMAO!!! Loved the ‘hair colour will seep into your brain” one. Hilarious!
    I seethed in rage though about the sleep one because I’ve had that one said to me so many times. “Get some more sleep/go outside and get fresh air instead of sitting on your ass all day, you’ll feel much better!”

  • Tommy

    Thanks for this article- and all of your philosophies, that I cling to. I don’t reply too often, am not active on the boards, but I always come in for the support that just reading others input gives me.
    It’s so true, no matter how much your loved ones try to support and mean well, (I am fortunate that they try) only those of us who deal with these issues really get it.
    On to miracle cures…my latest is to quit smoking cigarettes. Now I realize this is an awful, nasty habit….would love to quit, but find my self so stressed most of the time, that I do not even have the energy to consider it. To actually have a physician suggest that my laundry list of problems would (poof) go away if I quit, just made me grin. I know my body will love me more if/when I can, but I honestly can’t believe that I’ll be running marathons, and more importantly having a life from quitting smoking, only. Thanks again Doc, do me a favor- next time you don’t know what to say- just keep your mouth shut..

  • Gracie

    QUACK
    n.
    1. An untrained person who pretends to be a physician and dispenses medical advice and treatment.
    2. A charlatan.

    Ha ha! A quack is someone who has no idea what they’re talking about. Quack, it’s so appropriate.

  • Lisa

    To Sue: this totally cracked me up, and yes, I needed the laugh today, too!

    When I went to the pharmacy last night to get my medicine, it was very cold outside so I was bundled up. The pharmacist said, “you look like it’s cold outside.” Me: “yeah, it hurts.” (She was getting me my TWO narcotic meds.) Her: “yeah, this cold makes the joints ache.” Me: “Well, this is for fibromyalgia.” Her: “well, even if you don’t have fibromyalgia, the cold hurts.” Really? Do you take two different kinds of narcotics every day because it’s cold outside? The pharmacist. Hey, I don’t need sympathy, but you would think a pharmacist, who sees me every few weeks, by the way, to refill my meds, would know that I can’t just sit by a fire and feel better. Sheesh.

  • moblet

    My brother: “Have you ever thought of just pushing through it?”
    Me: “Er, yes, that’s what I was doing the whole time you saw me functioning. It doesn’t work any more; now my body pushes back.”

    He repeated the question the next time I saw him.

    Doctor: “You’re just stressed.”
    Me: “I have eliminated every possible source of stress from my life. My only remaining sources of stress are that this did not make me better, and I remain unable to support myself or live a normal life, and that doctors keep telling me that there is nothing wrong with me and I am “just stressed”. Can you help?”
    Doctor: “You’re just stressed.”

  • Rosa Carter

    As I take my Xanax to help me sleep through the pain in my legs, I’m reading this and literally laughing out loud, instead of moaning.
    Thank you for this. And to all spoonies in my Spock Voice Live Long And Prosper\/

  • My favourite was “you’re very angry. Anger is destructive. When you let go of the anger your body with stop being angry”.
    Yuhuh I’m angry!!!!

    Oh and “”well, xxx years ago, my boss had your. Ondition and she just decided it was time to get well. She went on a strict regimen or hippo-toenails and amazonian tree. Bark. Never looked. Back”

    Come on guys, with a little effort I brt you could insult me more.

  • Sara

    Thanks for the post this is perfect timing.

    I was just told that if I would just eat more then I would be better!!

    I have chronic pain and have lost weight due to medications side effects that damaged my stomach and my ability to absorb nutrients. It is the only visible thing wrong with me so people seem to love to focus on this.

    I try to look at the heart behind the suggestion instead of the words but I think a QUACK would help too 🙂

  • heather morgan

    I am breathless from the QUACK. Oh my God, can I please get a bumper sticker, t-shirt, no, a TATOO of that word please please pleae.

    I have had neurosarcoidosis since late 2009, and I really don’t share with people, since most cannot pronouce the disease. But who died and left you my doctor people? I mean really? And I have the Internet at home, and if you are not reading peer-reviewed medical journals, do not even talk to me, ok? I know more about my disease than most neurologists from necessity! Its a rare disease and you never even heard of it before you googled it or Bernie Mac died of it so just keep your trap shut about it!

    Thanks for another stellar article that lowered my blood pressure, increaed my peace of mind, and gave me a great chuckle for the day!

  • Jeri

    My sister has lupus, and I want to kick people who say stuff like this to her. We both Quack at each other frequently, thanks for publishing this!

  • Pam

    Stephenie,

    I always love your articles. My favorite saying is “you shouldn’t sleep so much”. I have a co-worker who’s always bragging that she never sleeps in past 5:30 am even on her days off. I’d love to tell her how many times I haven’t even gotten to sleep by 5:30. Give me a day off, please, so I can get some rest.

  • Rachel

    I am so forwarding this to my husband…he has said quite a few of those things..I think the reality of my Lupus and what it is doing to my lungs (Pulmonary fibrosis) set in about a week ago when my Dr. called to schedule my first chemo appointment…now he is like..what can I do…we need to talk to the Dr…he actually said WE instead of you….hope he will understand if I have to Quack at him…

  • Rachel

    I love this!!! I start chemo on friday and I think that is when my husband realized..Holy C*** my wife is really sick…how can I help her thru this….I am sending him this link to read….we’ll see how he responds.

  • Amen, QUACK!

  • Ivy

    Love this! QUACK indeed! Lol

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