lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I found this site which had politically incorrect phrases to say to someone who is chronically ill. I thought it would be humorous if we said these things to each other knowing how untrue our meaning is (reverse logic), kind of like a wink wink grin grin between us.
So I thought it would be fun to say which one we've been most offended.
I vote whole heartilly for number one "You don't look that sick!", and the person who used it most on me is my wife. It is still annoying.
from this site, i broke up the text below hopefully enough -- don't bother with the link I copied the text to help folks read through it:
15 Things Not to Say to Someone with a Chronic or Invisible Illness Susie Helford | April 29, 2014
Category: Health 101 69.4K 1260 73.2KInvisible illnesses are illnesses that you can’t see just by looking at someone. Things like Type 1 diabetes, Chronic Migraines, Lupus, Postural Orthostatic Tachycardia Syndrome, which I live with, and Fibromyalgia, may not affect your appearance, but they affect how your body functions and feels. Every day. Probably for the rest of your life.
When you say the following things to someone with a chronic illness, you probably don’t mean to hurt their feelings. A lot of the time you
are just trying to understand or sympathize. Well, from the perspective of someone who lives with a chronic illness, here are 15 things you should never say to someone with a chronic illness:
1. You don’t look sick Not everyone “looks like” what is happening to them. You would never say “you don’t look like
someone who is going through a terrible divorce” if your stressed out friends still manage to put on a brave face and pull themselves together. Not all illnesses are manifested outwardly.
2. You’re too young to be sick I get this one more than #1. You can get ill or go through any kind of stressful situation no
matter your age. Age is completely irrelevant here. Young, unfortunately, does not always equal disease-free.
When you tell someone they’re too young to be sick, it just makes them feel even more guilty or embarrassed for having an illness they have
no control over when society expects them to be healthy. And, moreover, just because you have an illness, doesn’t mean you want to be called “sick.”
3. Everyone gets tired That may be true. And most people are not getting enough sleep and rest. But the difference between someone with chronic illness
associated fatigue and an otherwise healthy person is the level of fatigue. If I go out drinking with friends and stay up late, it could take me a week to recover.
I have to carefully plan every activity of the day so that I can save energy to do all of them. The best line I’ve heard for this one is: you don’t know what fatigue is until you’ve had to
rest after taking a shower. Unless you literally think to yourself “how much energy will that take?” for every single action you take during the day (including brushing teeth, combing hair, standing to do dishes, putting on makeup, cleaning, driving, etc.)
then you experience a completely different kind of tired than people with certain chronic illnesses. I’m not saying you aren’t tired. Everyone does get tired. But my kind of tired is
not the same as a healthy person’s kind of tired. If I push myself past the amount of energy I have in a given day, the consequences are pretty bad. See the spoon theory for more about this one.
4. You’re just having a bad day I know you are trying to motivate someone and make them feel better when you say this, but it doesn’t come off like that. Personally, only
about 10 people in my life see me on my bad days. If I am outside, dressed, and active, that is a good day. So instead of making someone with a chronic illness feel supported and motivated when you say this,
it feels like you are brushing off their symptoms. Chronic illnesses are with you for life. You can change your lifestyle and find
treatments to help them, and some of them can be “managed,” but for the most part, that person will have to deal with a lot of bad days for many years to come.
5. It must be nice not having to go to work/school This one. Oh man. If you only knew. Sure, it can
feel that way when you take a day to play hooky or a long vacation. But when you are forced not to go to work or school, even when you want to be there, it is a different story. People with chronic illnesses don’t want to fall behind in
school and fight with the school district to get the accommodations they need. People with chronic illnesses don’t want to miss work and not be able to generate an income. Everyone wants independence.
Personally, I loved school and hated every day I wasn’t there. It is way more stressful not being in school and knowing all the work you will have
to do to make up for it than being there on any given day. And I have loved the jobs I’ve had and been sad about every day I have missed. Believe me, it is not nice having to stay home instead of being productive, just trying to find
ways to distract yourself from pain or exhaustion. It’s fun to watch TV for a day or two, but after that, I feel trapped. I guarantee anyone with a chronic illness would gladly trade in their symptoms for a full time job.
6. You need to get more exercise Exercise is really important and no one is denying that. It helps pretty much any health
condition. But it isn’t a cure-all. For someone like me, whose heart rate regularly reaches 120 bpm just from standing still, exercise isn’t always doable.
I do “exercise” but it is more like physical therapy exercises than what most people would consider a good work out. But remember, everyone
has limitations. For people with chronic illnesses, their physical limitations may make it harder for them to do traditional exercises.
And even if they do, it will probably not be a cure for a condition that is caused by something totally different like an immune system that attacks itself or a nervous system that doesn’t regulate itself correctly.
7. I wish I had time to take a nap See numbers 3 and 5, which relate to this one. To someone with a chronic illness, to whom napping is not a luxury but in fact a necessity,
hearing someone say this is as much a slap in the face as hearing someone say they wish they could take a break from work or school too. Hearing anyone “wish” they could have a part of a chronic illness just shows how misinformed they are when they say this.
Wishing you had more time is pretty much a universal wish. But wishing you had the time that a person with a chronic illness has is not the same.
If your wish is granted, you can get more time, but you also have to get the pain, the exhaustion, and the difficulty figuring out how to be productive in society. Remember that next time you have the desire to say this.
8. The power of positive thinking Positivity is really important and having a negative outlook can negatively affect an illness. But having a positive outlook will
probably not cure it. I’ve gone through all the stages of positive thinking and denying my illness. I have thought, if I just put my mind to it, I can do that. And then I’ve suffered the consequences of pushing myself beyond my limits.
Positive thinking that is productive for chronic illness sufferers is not telling someone that thinking positively will help them with their symptoms. Instead, productive positive thinking is finding the positivity that comes with their illness. For me, if I hadn’t had POTS,
I wouldn’t have gone to Lake Forest College to stay close to home and my doctors. It was there that I learned and discovered my passion for environmental studies and met the love of my
life. I wouldn’t have found an inner strength in myself and learned to value the time I have in the same way I do. That is productive positive thinking. But it’s not a cure.
9. Just push through it Hearing this makes me want to hit my head against a wall. This goes along with
#3 “Everyone gets tired/ headaches/ back pain/ insert symptom, just push through it.” The problem with this statement is the underlying assumption that a person with a chronic illness is not already pushing themselves. Every day I push myself. I push through my symptoms all the time. If
I didn’t, on my bad days I would not eat, walk, or shower. And the same is true of anyone with a chronic illness. Remember: there is a difference between pushing and pushing past your limits.
Pushing yourself is good and necessary. But pushing past your limits can set someone with a chronic illness back for a while as they recover from overextending themselves. Suggesting to someone to just push through it may not feel insulting, but it is like telling a marathon runner to just go faster on their last mile.
10. It will get better, just be patient I’m sure everyone who says this truly means well. And it is true of a lot of things that patience is important. But not all chronic
illnesses will get better. Patience is a virtue, and an important one. But please don’t say this to someone who has an illness that they will have for their entire life. It could get better, but it also may not.
So figuring out how to live within the confines of your illness and make the most of it is more productive than expecting to get better. This is not to say that you shouldn’t hope to get better- just that you shouldn’t count on it. That’s denial.
11. Have you tried ____ … the paleo diet, acupuncture, super magic moon crystals, this weird new therapy that I heard about one time but know nothing about? Unless you are a medical professional and/or a person
with a chronic illness has asked for your advice, please keep it to yourself. I haven’t tried super magic moon crystals, but I have tried just about everything else including alternative and new treatments.
I’m actually trying a new one now. And I probably won’t stop trying because science makes advances. But someone with a chronic illness doesn’t want to defend themselves to you on how they have already tried or don’t trust the efficacy of a certain treatment,
especially if your evidence is only anecdotal. I know you probably mean well and are trying to help, but just assume that someone with a chronic illness has tried every option available to them. Everyone wants to feel good.
12. You should stop ____ See number 11. I know you mean well and you want to help. Everyone has bad habits they should probably stop. Did you know that one of the parts of my treatment is to increase sodium in my diet?
So if you want to tell me how you or someone you know of feels so good because they cut out salt, it will go in one ear and out the other.
What works for one person does not always work for another. Please keep your unsolicited unprofessional anecdotal medical advice to yourself, because you are wasting your time and possibly insulting or discouraging someone with a chronic illness.
13. It’s all in your head/ you’re just stressed/ depressed/ anxious If I had a nickel for every person (including doctors) who told me this before I was diagnosed with POTS (and some afterwards) I would have really heavy pockets.
I guess when we don’t understand something and don’t look physically sick we assume it is mental. It must be cultural or part of human nature based on how often this is said to people with chronic illnesses. Stress, depression,
and anxiety can all make symptoms of chronic illnesses worse. But they do not usually cause them. Chances are when you say this to someone you are only contributing to their stress, not helping them see something they never saw before.
14. You need to get out more A change of scenery can do some good. And I believe that spending time outdoors is good for your health. But when you say this to someone with a chronic illness, it doesn’t sound encouraging. Someone with a chronic illness wants to get out more (see number 5).
All it does is make them feel guilty for not being able to do something they already want to and are probably trying to do. So before you say this, remember that they probably agree with you and they don’t need the guilt on top of it.
15. You take too many medications People differ on their opinions of whether medications help or are bad for you. In some cases they are medically necessary. This is one of those things where you should probably keep your judgement to yourself. If I take a medication, I have researched the side effects and I have tried every other lifestyle change and vitamin that I can before I get to that point.
Not everyone wants to just pop a pill to solve a problem. If someone is having a symptom that is controlling their life medication is sometimes the best way to manage it. People with chronic illnesses do many things to try to live as normal life as possible, and medication is one small piece of that puzzle. It is part of a lifetime of adaptations, treatments, and figuring out how to live with a chronic illness.
So now that you know better than to say these things, you can relate better to the people in your life with chronic or invisible illnesses.
And remember: the absolute best and most powerful thing you can ever say to someone with a chronic or invisible illness:
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This sounds like the Lyme Instruction Manual at Johns Hopkins.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I'll float this to the surface one more time.
22 I can't believe a doctor would say that, aren't they supposed to be sensitive and caring folk. Oh wait a minute! Could the doctor been associated with Hopkins somehow?
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
No, he is in Missouri. He told me I would find out that HE was right and my LLMD was WRONG someday. HA! NOPE!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
love it! but you left off the last sentence!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
LisaK- The last sentence should be...
"I love you."
Wouldn't the world be a much nicer place if that was it?
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
Thanks, Bob, this is great!
"I believe you," "I love you," and "I will stand by you," would make a world of difference in every lyme patient's life!
"I guarantee anyone with a chronic illness would gladly trade in their symptoms for a full time job." ---I GUARANTEE IT!
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I know what you mean TNT, I dragged myself into work for 3 years. At times could barely stand for 15 seconds. Still don't know how I got into the building.
My own family denies I was ever sick. I loved this list because it is what we all go through.
I agree if we were just recognized it would make a world of difference. Never mind getting some semblance of compassion and empathy.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
All of them hurt. I can't pick just one.
It's great to read and article from someone who really understands and explains the issues well.
I love the cartoons in the article too.
Posts: 2839 | From California | Registered: Jul 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
The cutest I have experienced is a Korean acupuncturist tell me I was "Pat".
Over and over again during the shell/bone/scraping massage. She would literally scrape the "Pat" during these massages.
Cute as a button and strong like a bodybuilder, and slightly vicious...the massages hurt like the very devil!
The rudest was a walk-in clinic doc telling me I was "getting fatter" and I needed to "exercise more".
Which would explain the fainting, swollen joints, and memory loss....
This was weight gain when I was playing sports 5 days plus a week...
Right...
But the best best best thing about lyme and co...it weeds out the untrue friends, and shines a glorious spotlight on the true friends and family who sincerely love and care for us.
I hate to say this, but lyme and co has been an absolute blessing in that degree.
Weeds out the bad 'uns.
The quality of people in my life now is platinum.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Greta, I wish I could agree with the weeding of bad and cherishing the good people.
maybe I did something wrong to push them away, but I have been pretty alone. no one calls and ever says, "how are you". not one of my 5 siblings, not one of my many 'before' friends.
some church people have in person. but if I start to actually talk they don't really want to hear much. everyone's too busy. this has been a lonely wake up call for me. not sure it is good or bad knowing no one really cares or knows how to care.
I'd like to be a good example one day to others that might need me when I get better, but anger steps in and my hurt feelings say, "hey, no one helped me, remember?".
selfish, yes. not proud of that. just so sad and alone. and the real people that need to read a list like this probably never will.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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