Things NOT to Say to Someone With a Chronic Illness

I thought of this entry because as I shared the other day, I recently heard one of my friends ran his mouth saying I pick and choose what I do, I don’t do things anymore not because I am sick, but because I am lazy. HA. I would never ever wish what I am going through on my worst enemy. Until you live a day in my shoes, zip it. I handle a lot, I think anyways. And with a smile to boot!

For myself personally, I don’t care if I am vomiting all over the place, want to cry in pain, feel as high as a kite, can’t feel my leg or feet, or see things that aren’t there, I get up, and go. I need to. For me. I need some sense of independence. It keeps me going. It keeps me from giving up. It gives me a sense of normalcy. I need to work and make money.  I need to work to feel sane. I AM NOT LAZY.

I do what I need to and overdo the things I still do and in turn my nights are usually horrible. If you know me personally, you haven’t seen me out dancing, having cocktails, or singing karaoke in a LONG time. Do I miss it… YES.

Is it because I am “lazy”? Absolutely not. I miss my life. I miss going out and doing things. I use to always do things outdoors, like wheeling, target shooting, swimming, and walking my dog. I use to waitress. Now I simply can’t.

That was a huge stab in my back. Don’t ever judge me unless you have lost complete control of your body and your mind and can’t awaken from this horrible nightmare that is Lyme and co-infections. Ever.

I have even heard from a Lymie saying if I am so sick why am I working? She said she couldn’t because she was “way worse”. Listing things off to make sure I know that she is much worse off. I roll my eyes every time, because I don’t sit and compare myself to others. I am me. You are you. I am not going to list of my gigantic list of problems and demean yours.

First of all, everyone is different. Everyone’s symptoms are different. Mentally, people handle things very different than the next person. And how dare a Lymie say such another thing about another? It is not a competition. If it was, you win! I DON’T want to be sick. If you want to be the “sicker” one, than go for it. We are all on the same team here. Advocacy. Awareness. Healing together and providing hope to one another.

It drives me insane that many of us seem to attack each other. We fight so hard to get people to listen to us and get the CDC and IDSA to believe in chronic Lyme, but it is difficult when it seems like we are not united like we should be. We all need to be together in this. Being different from one another does not mean that we are not alike. We all have a common cause even though our stories can be much different from each other.

Some might not be able to work or do anything because they can’t move or literally get out of bed. Some need more help than others. Some can no longer drive and don’t have a good support system. Some are just plain much sicker than others. Some people might look completely normal to the person next to them, but they are completely suffering on the inside.

Never judge another person’s journey. Whether it is in sickness, or in life. You just don’t know unless you are that person. It is unfair, and it is not right. 

As you can tell, I have a little bit of an angry tone. LOL Lyme Rage. It’ll get ya. Crazy Kimmie. Roar.

So the first comment  is what set me off and brought me to the idea on doing a post on things not to say to someone with chronic illness. It reminded me of every little thing that someone has said to piss me off or annoy be during the course of being sick.  It could apply to any illness really.

I hate it when people assume that Lyme is just some occasional joint pain. That is one of the reasons why I share my story. I hope to educate others about this disease and maybe they will learn the complexity of this disease.

Invisible illnesses can be extremely difficult because they are much harder for people to understand.  Lupus, Crohn’s, Fibromyalgia, personality disorders… there are so many that people suffer in silence.

My illness has been somewhat different though, as my illness for the most part has been anything but invisible. For awhile, back in winter and spring of earlier this year, I not only had my gallbladder out, I had pancreatitis for 5 months, hepatitis of an unknown origin (likely drug induced), ferritin levels off the chart, and just about anything was coming back with an issue on my bloodwork from a blood clotting disorder, to mycoplasma, to nutritional deficiencies, to heavy metal toxicity. I was a wreck. My tics were entirely worse. I had a lot of seizures. If I was well enough to really get around, I walked like I shit my pants. My weight was down to 105 pounds. I LOOKED sick. Everyone knew there was something wrong with me. No doubt about it.

And there will be comments. It is inevitable. Whether to your face or behind your back. That is life. But what do we find OFFENSIVE in conversation? Or just plain ANNOYING?

I saw a few entries from others but would like to incorporate it with my own thoughts and feelings. The other entries were great! And of course I will site them so you can check out the links for yourself. Please add my list of your “peeves” if you would like! 🙂 Sometimes it is good to vent.

Well, you could tell my above things were two things I was upset. They were just plain mean. Intentionally mean. I don’t do mean. I don’t like mean.  I think people that are intentionally mean are really unhappy people themselves. Therefore, they feel the need to say stupid things and feed off of negative energy to make themselves feel better. Off my chest. Phew. Once again, roar.  Other things not to say to someone with a chronic illness: 

To me, the greatest one is, “But you look great!” – I have gotten this a lot since I have put a lot of the weight I had lost back on. I no longer look like I am on the brink of death. Once some issues I was having were addressed, I had more color in my face. I just look better, healthier.

But there are MANY of you that don’t look or have never looked sick at all. Doesn’t mean you aren’t suffering inside, hating every little bit of what you are going through. I think when people say this, they are trying to make you feel better, but in turn, I take it as minimizing how you are feeling. If you look good, you must FEEL good too, right?!

“I get tired too. Especially when the weather is like this.” – Ugh! No.. you don’t understand. Don’t try that empathy bullshit with me. Almost all Lyme patients have a sleep disorder of one form of another. Many of us either don’t or have a hard time getting to the non-REM level of sleep, the level that makes you and your body feel rejuvinated and restored, compared to a healthy person.

The same goes for the “I get achy too, especially with this weather” -No.. you don’t. Empathy with good intentions once again. Gosh, it is always the weather! But you really have no idea unless you are suffering from a debilitating disease. So once again, stop it. Or I will waddle my Lyme riddled ass over to you and punch you in the face.

“How are you feeling, how are you feeling, how are you feeling!!!????” – Ok now, STOP IT. It is annoying. Sometimes we don’t like to talk about how we are doing constantly. A chronic disease is CHRONIC for a reason. Chronic Illness = persistent for a long time, or constantly reoccurring. You’re answer is probably always going to be the same. “Okay”. “Sore and tired”. “Miserable”. When people phrase it right like they often do with myself, “How’s it going?!” My answer is always the same. “It’s going.”

I want to hear about your day is going. What is new with you. The latest gossip. I don’t want to sit and talk about how I feel. I want to forget about it for at least a little while, as it has consumed my life.

“Well if you do this, then you will get better!” -Your remedies on how to make me feel better, like it is an easy fix. CHRONIC. Not an easy fix. And no, you are not my fucking doctor, you can shut your mouth now. Unless I ask you for doctorly advise, keep it to yourself. I have a bunch of antibiotics, supplements, etc. that I take. I don’t need your additional two cents. I trust my amazing, knowledgable naturopath, and one of the world’s leading Lyme doctors. Thanks but no thanks.

“So and so has Lyme (or whatever chronic illness) too, and he/she acts fine. He/she did this and they are all better!” – Kind of goes along with my  doctor pet peeve. Well, good for them. Everyone is different. What worked for John and Jane Doe, the person down the street, your second cousin, your dog, is going to be different than me. I obviously have no control over my brain causing me to do what it does. Or my organs. Or my joints.

“Call me if I can do anything to help!” – I am not going to call you. I don’t really want you doing things for me. Also, that is like one of those annoying empty things to say, because if you really wanted to help, you would just help.

If you really want to help, show up like my best friends and take me out of the house to do something simple. Do something specific. Bring me something that you know I can’t get myself, like cookies for Dave, apples, or a pumpkin for my front steps. Drop off dinner. Dinner that I can eat of course! LOL Grab me a coffee because you know I am feeling terrible and don’t want to drive the two minutes down the road to get one. Just come over and start cleaning. I always tell my friend who cleans to stop, but I know at nearly 6 feet tall ( I am 5’4″), she could stomp me to the ground. In turn, I get my dishes done, my house swept and vacuumed. A little less stress. Some people I just don’t want cleaning my house though. So just don’t.  If you have doubts, you probably aren’t one of those people. Lucky for those people, you don’t get the pleasure of sorting Dave and I’s undies.

“I wish I had the time to relax like you do and have more free time..” Umm what? I am not relaxed. I am stressed out of my mind, scared, hurting inside and out. I do what I can for work, then I sit on the couch. Missing life. It has been over a year since my treatment. And I have spent the majority of it on my couch. Or in bed. I don’t get out much and do anything. My close friends have been more than accommodating and doing things that they know I can participate in, like going to dinner. A bon fire which involves sitting. A movie. Even sometimes though, we have to make it right in town, and we generally play it by year, in case I am not up to even getting dinner or anything, really.

“You are having a good day! You must be getting all better!” – People with chronic illness have good days and bad. It by no means that we are all better. Just because I could go to the pharmacy, the bank and the post office after I go to work, does not mean I am healed. I always pay for it afterward, but I still do it! Sometimes I also don’t look like complete dog doo. If I am feeling okay, I will wash my hair and go the extra few steps. Take more time to take care of myself. So of course I am going to look better.

For me, my good days are not becoming necessarily more frequent, but when I have them, they are MUCH better than they use to be. I use to have some sort of functionality, best from 10-1. Now I function best from 10 to 2, rest, then can do a little more from around 4-6. That is huge for me. I can cook dinner. I can sweep and vacuum, if I am not taking a longer nap. But I am literally jumping for joy over the simple milestones.

That is another thing. When I am proud of a minuscule accomplishment, be proud with me, even though it sounds completely stupid. I made it through the airport without a wheelchair. That is amazing to me. I almost cried once I got home as I realized that I have come such a long way to make that milestone. It may sound stupid but it is a huge deal to me. Do not ruin it by telling me how you are doing something simply amazing, that I could not even remotely do. Or how you got a good deal on a pair of jeans.

“It should be fine if you go and do this with us!” – No.. it probably won’t be. I know what I can and can’t do. It is great to have an offer to go out and do something, but if you know I can’t go out dancing, then don’t ask. It makes me sad. If you really want to hang out, then come see me. We can sit and watch a movie together. To me, it is an empty invite.

It is also annoying if I do go out and do anything, acting like I am all better. I went out for an hour. Whoopedy doo. I spent the next two days getting well because I feel terrible afterward. But sometimes it is worth it with the right people.

An example is going to a restaurant with some friends that I wanted to really see a few towns over. I hardly ever leave town. Dave obviously drove. I had a seizure in the parking lot, again once I got home, and slept for 14 hours straight, and woke up feeling like I was hit by a train and like I had never went to sleep. It was just too much for me that day.

This annoyance also applies to things like overstaying your welcome. Unless you are my best friend that I don’t feel like I have to entertain, don’t. Sometimes I just want to be left alone. No one wants to have company when they feel like they are on the brink of death. They want peace and quiet. If you can see I am having a hard time, go home. I never know how I am going to be doing two days from now, so it is best to check. And please be understanding if I cancel plans last minute. It is not you. It is sometimes just exhausting having company.

Not trying to be a double standard in the means of canceling plans, at least for me I ALWAYS let a person know beforehand how I think I am going to do and if I might not be able to make it, but don’t say you are going to come over if you don’t plan on showing up. That is an asshole move. For someone sick or healthy.

For those of us on the couch and someone offers company and we are well enough for company, then come! Doing absolutely nothing makes you really look forward to the little things, and it is crushing when you look at the clock and no call, no text, no show because you found something more “fun” to do. It has happened to me. I bet it has happened to you.

“It could be worse!” – Yes, it could. It could always be worse. But you just told me what is going on with me isn’t really all that bad, right? After all, “it could be worse!”  For Lymies, I have gotten the comment that drives me insane.. “At least it’s not cancer!”. Yes. Cancer is terrible. But in my defense I will say, cancer is a recognizable disease, and everyone agrees upon it. Treatment is pretty cut and dry for options to be used to heal. For Lyme disease, there is so many disagreements about treatment, many are left without a doctor that is willing to treat them, and so many doctors are not treating the patients in a way that will be effective for the patient. Many do not realize the severity that Lyme and co infections can actually be, and yes, they can be deadly.

I should note that a lot of what I have said IS in fact, with good intentions. But those words coming out of your mouth most of the time make me feel like what I am going through really isn’t all that bad. You have no idea what I am going through. And I don’t know what you are going through. Plain and simple.

“It is all in your head.” – The annoyances and wrong things to say from your doctor. This is the worst thing to hear from your doctor. If you have a controversial illness, like Lyme, or they just can’t figure out what is wrong with you, it is in your head. You are depressed. You have anxiety. You have fibromyalgia ( I am convinced fibromyalgia IS Lyme disease.. another post for the fibro forums one day..).  Some of you have been to dozens of doctors to finally get someone to listen and believe you, that is is indeed NOT in your head.

Other than being misdiagnosed with other ailments, I have been told my the medical community that “I am doing this for attention” . A nurse told my husband this when he told her I have Lyme as he brought me into the hospital from a really bad seizure. Trust me, I could get attention in a lot better ways than having a chest port that in turn I have not taken a shower like the rest of the world for OVER A YEAR. Not my cup of tea. A low cut top with a push up bra would have been the easier choice for some attention. haha.

Getting treated like a drug addict. Once I said my list of medications at the hospital, I was treated like an addict. I use to not as much as take a Tylenol. I don’t like pills. But I need them to control my seizures and tics. I take my dozens upon dozens of pills and IVs every day to keep my immune system going, to keep me from having constant seizures, to try to control my verbal and physical tics, to help my heart beat normally, to sleep, to kill Lyme and co-infections to reach a level of remission one day. I am not a drug addict.

My last one that really bothers the crap out of me that many do… LYMES disease. You have no right to talk about LYME disease if you do not even know how to say it right.

This is my negative nancy post. LOL I just needed a vent session. As I  am writing this, as you can tell,  I am not so positive. No butterflies, rainbows, and unicorns today. Sorry folks. I still love all my readers, though!

I will do a follow up on positive things that we will appreciate and the right things to say will follow sooner or later, if my brain fogged mind reminds me to 🙂 . And what we can do to help ourselves deal with having a chronic illness.

Some great links below, I will also probably incorporate some of this info into my other future postings 😉,;,,      << I can’t remember or find the right words now… yay!

44 thoughts on “Things NOT to Say to Someone With a Chronic Illness

  1. Scary lady!!!! NOT!!
    So clearly you live inside my head, and share my annoyances!!!
    I’ve got chronic asthma, sarcoidosis, osteoporosis etc.etc.etc. been ill all my life, BUT, have had children, been married twice, have travelled, been known to enjoy a party, and a drink, and have worked, I’ve gone through everything that you have, only, at 55, just more years of it, I can look well, and sometimes I am well, not a ‘normal’ persons “well”, but a good day for me, people say the most stupid things, and I feel like yelling at a lot of them too, it’d be brilliant if you could say, let’s swap bodies, I’d gladly take yours, and you’re more than welcome to have this fucked up body, it’s been well looked after, but it’s broken, more on the inside, where you can’t actually see it!!!!
    It was really great to read your rant, you put it so well, and I for one was so pleased to hear I’m not alone!!!!

      • Kimmycakes said it all perfectly! I’ve had all of these maddening things said to me and so I don’t even want to talk about what’s wrong with me anymore. Also, friends and family have abandoned me because I’m sick and I know they found me boring and frustrating. I was devastated but now I’m fine. I just realize that most people are just not comfortable around someone who is just so sick, someone who cannot make it out of bed or off of the couch most days except to go the doctor. It’s almost as if they feel as if they are going to catch Lyme.

  2. Pingback: Kimmie roars well… “Things not to say to someone with a chronic illness.” | I have told my kids that every thought they have doesn't need a voice. But...

  3. this is hilarious! i love your spunk :D. we have a similar philosophy! i couldn’t help noticing that they didn’t remove the paper part of your tegaderm dressing. the ‘window frame’ around the dressing part is intended to come off! i imagine it’s very uncomfy the way it is. there is a ‘slit’ in that paper part, pull carefully and it should come off it in a circle. then it’ll be just tegaderm, no paper stuff! ❤

  4. “Mentally, people handle things very different than the next person.” — THIS. EXACTLY.

    Shit – I ask how you are doing every day lately. You can tell me to fuck off. I can take it. 😉 I genuinely care when I ask, and I want to hear whatever you want to tell me. 🙂

    I agree with you that the people who say, “If you need anything, CALL.” — A good friend would never really HAVE to be called. They would just do something.

    • 🙂 I would NEVER tell you to eff off! You know what it is like and it’s not just saying something, and I can tell you REALLY how my day is going. 🙂 🙂 Plus you’re awesome.

      I def can’t stress that mentally people handle things differently. What is a HUGE deal to someone else that I think to myself “really? that’s the worst?”… even in life and not in illness but I absolutely do not say it. I am supportive, listen, and show respect because it is obviously a big deal to them. So always be nice. Plain and simple. 🙂

  5. Good for you for saying all the things we all feel. I too am sick of people not believing me even though I can show them proof of illness (asthma, paralyzed diaphragm, migraines, liver tumor, osteoporosis, arthritis etc.). Hang in there and know we understand 🙂

  6. I love this post! I’m sorry that you are going through this ordeal…..but even dealing with a chronic illness, you make more sense than many totally healthy people…LOL! 🙂

    You make so many great points. I’ve felt the same way about many of the things you mentioned. The “You look fine!” has to be one of my least favorites. The other is people not understanding that when we push ourselves in order to spend time with them…..we pay for it later. They might see us out and smiling, but they don’t see us over the next couple of days when we can barely move and need to regenerate.

    Wishing you all the best! Kicking kicking butt!

  7. Pingback: Life with Lyme » I’m back!

  8. All my best friends think I’m crazy and treat me differently. I hate this disease but in the end I’ve had some life changing experiences. Through those experiences I’ve changed my major from Computer Science to Nutrition and maybe might change that if I don’t relapse. I don’t want to brag about the symptoms I’ve had but it wasn’t fun =/ There’s a lot of Lyme associated conspiracies from different Lyme groups that make us look insane.. I wish to help anyone with this disease in the near future.

  9. i really enjoyed reading this as i have just returned from visiting my sister who announces in front of everyone that i am basically a hypochondriac aaarrrrgggg. i love my sis but if i had the energy i would have gave her a slap. in her words ” catriona thinks somethings wrong with her, when she gets tired of that diagnosis she finds something else it can be”!!!!! really im obviously just exausted all the time as i am lazy and in pain cause i am moany and all the rest cause i want sympathy!! i dont want sympathy i want to be better!!

  10. Pingback: January Part 3 – I Swore to Tell the Whole Truth | kimmiecakeskickslyme

  11. Pingback: Invisible Illness | kimmiecakeskickslyme

  12. Wow, mine started down in the gut as well, but more up into my liver, or right armpit, lots of lymph tissues, doctors pulling parts out (healthy gb now gone!), promising for results, then say oops wrong diagnosis, and they keep trying, doing another HIDA scan again, it’s like c’mon you idiots. Yep, I’m a hypochondriac too, none of my family gets it, although they are starting to come around. Also, another family member’s son is now symptomatic and in the earlier stages, I diagnosed him myself last weekend, going over all kinds of symptoms, he’s also been to the doctors, worn the holt monitor, mini strokes, all kinds of weird stuff, big deer hunter and woodsman, well not anymore, he has vertigo so bad he can’t even climb a ladder, let alone tree stand. I watched him, he’s like I was for many years, running on willpower, adrenaline, and stamina, it has yet to knock him down another peg, but it will. While my family was partying on all afternoon, I had to crash out and take a nap after lunch.

    Only a couple of exgfriends who we truly loved each other, got to know me as a person, can see and believed that I am unwell, – enter hope. Earlier this year I went through many stages of wanting to die, and I still do. I am able to still contact with them because they are what we call “good” or “real” people, who don’t judge and live in the happiness machine existence, they live to do well, be well, and love one another.

    My current girl, bless her soul a hundred times, she stands by me, and promises not to leave me, this means the world to me right now, the world. Still, I got a work ethic and pull my weight, cooking, cleaning, heavy lifting, and treat gals with respect. I have to sleep alone because I sleep so lightly, and waken before her, she sleeps so well. In the mornings I slip into bed a little before she gets up so I can cry in pain, in her arms, a 44 year old man baby.

  13. I just found this and amen…sister amen. I try to be strong for my family and put a smile on my face. I have become so good at putting up a positive image that I almost died from gange green when my appendix ruptured. This isn’t the only time I was able to keep a front and it almost cost me my life.
    People think I am lazy because I don’t work anymore and sleep so much. I just want to go balistic. I am anything but lazy. If I was lazy I would probably be dead right now instead of pushing forward. I have MS, Lyme, Fibermyalgia and Psoriatic Arthritis…yeah, I am lazy. Some how in my laziness I got my Ph.D, raised three daughter(civic minded, hard workers),start a sewing business, volunteer with elderly vetrans, keep a spotless house…and I am lazy. I fight myself to do the most simple task like brush my hair, yet I learned to adapt tasks to what I can, to keep my sanity. I learned to work smarter not harder just to get by. My daily activities are planned so that I don’t make myself worst. One day of over doing it can take weeks to overcome. I know healthy people who do less than I do,yet I am under the microscope because I am sick.
    Thanks for giving voice to all I feel and never say. Now to be lazy and get some required sleep.

  14. Thank you for your words this evening. They made me laugh! My personal favorite experience…last year a local Lyme “specialist” said to me “it’s not like you’re that sick”…Wow…just wow.

  15. Pingback: Things NOT to Say to Someone With a Chronic Illness | Slices Of Lyme Pie

  16. After having a seizure, losing 20lbs, 3 trips to the ER in 3 months, on/off crutches for a year…etc (YOU know the drill!), my primary care literally said “be prepared that this all stems from your mind”. Because somehow my mind is so powerful I can make my foot turn purple, change colors and temperature and inflame…….My own mother even said that she thought throughout this that I was a hypochondriac (yeah, no shit Ma, I noticed you jumped on the doctor bandwagon) It’s nice to hear that other people are just as “crazy” as me, but extremely sad at the same time that this shit is happening and doctors won’t educate themselves on such a debilitating disease. They either just don’t want to deal with it, or they have no clue what is wrong but won’t admit it and instead YOU MUST be crazy….f**kers

  17. Pingback: Things NOT to Say to Someone With a Chronic Illness | bonniesblogsite's Blog

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