TOUCHED BY LYME: A second helping of "what not to say" to those sick and in pain
Guest columnist Toni Bernhard’s recent blog about what not to say to sick people brought a huge response from readers. Here’s more on the subject.
From the Psychology Today website:
More On: What Those with Chronic Pain or Illness DONāT Want to Hear You Say
Change Your Lifestyle
1. āDo you take vitamins?ā This comment reminds me of the people whoāve asked me if Iāve tried sleeping pills. Who hasnāt taken vitamins?!
2. āAre you eating enough fruits and vegetables?ā Lots of people report getting asked this.
3. āJust eat more.ā
4. āJust eat less.ā (This one forms a nice symmetry with #3.)
5. āAre you drinking water?ā
6. āYou just need some fresh air and exercise, thatās all.ā
7. āWhy donāt you go to bed earlier?ā
8. āWhy donāt you take a shower? Youāll feel better.ā This one hit home with me because I have days when taking a shower has the opposite effect: this simple task uses up all my energy stores for the day.
Such an Easy Lifeā¦
1. One woman wrote: āI mentioned to a friend when I got to his kidās birthday party that I almost didnāt make it because Iād been in bed most of the weekend and it was hard getting out of the house. He said, āYou have such an easy life!āā
2. Wrote another woman: āItās frustrating when someone thinks you are āluckyā to have so much leisure time available. Yeah, itās great to have so much time, but Iām unable to work and thus am so far below the poverty line that homeless people begging for change probably have more money at their disposal than I do.ā
This raises what I think is a hidden epidemic for those with chronic health problems. Many are living below the poverty line, due to a combination of not being able to work and of having to spend any money they do have on medications and other treatments that health insurance doesnāt coverāif theyāre lucky enough to even have health insurance. Tragically, poverty, chronic pain, and chronic illness too often go hand in hand.
3. Finally, this woman sums up āSuch an Easy Lifeā¦ā as well as I could: āMy favorite is when people say Iām lucky that I donāt have to work. Itās like telling someone without legs theyāre lucky they donāt have to take the stairs.ā
Chronic Means Chronic
1. Several people wrote that theyāve been asked, āYouāre STILL in pain?ā Many people have said to me: āYouāre STILL sick?ā Yes, weāre still sick and weāre still in pain becauseā¦chronic means chronic!
2. Said to a person with chronic pain: āDonāt worry, youāll be able to go hiking again soon.ā Iāve had people say this to me about many activitiesāfrom traveling to resuming my teaching career. I think that if youāre not sure what a friend might or might not be able to do in the future, itās better not to raise it.
3. āCall me when you feel better and we’ll go to lunch or do something fun.” Again, chronic means chronic.
4. āMy mother-in-law had that and all she did was take a little Tylenol.ā Sigh.
5. āAt least itās not cancer.ā This comment doesnāt fit neatly under any of the categories Iāve used, but I wanted to include it because several people reported having had this said to them. Itās not helpful. In fact, one woman wrote that at least if she had cancer, her family would get more support both from the medical community and from their church congregation.
Itās Your Fault
I recognize that this category is subjective. Comments that I interpret as implying, āItās your fault,ā may not seem that way to others. That said, hereās a sampling of comments that, to me, are suggesting to a person who is sick or in pain: itās your fault.
1. āYouāre too young to be sick,ā several people reported being told. One of them added: āOh, how wish this were true. Maybe by the time Iām in my 80s, people will stop saying it.ā
2. One woman reported that her friend, after listening with āa seemingly caring ear,ā said: āAttitude is everything, you know.ā
3. A young woman wrote that sheās been told to distract herself from chronic pain by āgetting a job, mingling with people, and engaging my brain.ā About these comments, she said: āIām sensitive about being perceived as lazy. Iām hurt whenever this comment is made to me. Iād love to be able to will myself to do whatever Iād like.ā This resonated strongly with me because I spent years trying to will my body into good health. All I got for my effort was a lot of mental suffering added to the suffering of the illness.
4. āYou must be out of alignment with your life and looking for an excuse to make some changes.ā The recipient of this comment said, āBut some of us really loved our life before we got ill.ā To that, I say, āYes. Yesā! I was never happierāpersonally and professionallyāthan when I got sick in 2001.
5. āMaybe if you quit talking about it, youāll get better.ā
6. āLook what happens when you donāt look after yourself.ā
7. āJust snap out of it.ā The woman who reported this comment went on to say: āLike itās really that simple and Iām so totally dumb and stupid that canāt figure it out. How silly of me after so many years.ā
8. Saving the worse for last, a person reported that his or her doctor said: āIf you think of yourself as a cripple, you will become a cripple.ā This comment is hurtful and inappropriate in so many ways.
Religion and other Spiritual Matters
This is a sensitive topic. We all have our particular religious and spiritual beliefs and they may understandably feel essential to our well-being. But in my opinion, religious and spiritual beliefs are so personal that unless you know that the person youāre talking to shares your beliefs, it’s better not to raise the subject. As one person commented: āThe assumption that all of us have or even should have identical spiritual beliefs is unrealistic in our pluralistic society. If you’re not sure you’re on the same track, it might best be avoided.ā
Keeping in mind that this is a sensitive topic, I offer some comments that have been directed at those struggling with their health.
1. Two people wrote that theyāve repeatedly been told, āGod never gives us more than we can handle,ā and that itās not at all consoling to them. In fact, they said it makes them feel like failuresāas if theyāre not handling well what they should be handling well.
2. āGod has a plan for your life.ā
3. āAll things work for the Good for those who love God.ā The woman who reported this comment wrote about it: āThereās nothing more annoying than some random bible quote thrown into your face as a āreasonā for chronic pain.ā
4. āIf you pray to God harder and longer, He will cure you.ā
5. āThe universe is trying to teach you something.ā
6. One woman wrote that her brother repeatedly says to her, āObviously you donāt pray to God enough because if you did, he would heal you. So you must be doing something wrong.ā She said that every time he says this, she bursts into tears because she feels blamed for not doing enough to get better.
Iāve found that many comments about religion, regardless of the speakerās intent, leave people that theyāre spoken to feeling as if itās their fault that theyāre sick or in such pain. And so, these comments could have gone under the previous heading: Itās Your Fault.
If you have friends or family who suffer from chronic pain or illness and are thinking, āSo, what can I say?ā I recommend you have a look at my piece, āWhat People With Chronic Pain or Illness DO Want to Hear You Say.ā In addition, the Buddha gave us some good guidance when he said that before we speak, we should reflect on whether what weāre about to say is true, kind, and helpful. Itās often easy to meet two criteria, but not all three. If youāre in doubt as to whether what youāre thinking about saying meets all three criteria, itās best to not make the comment. Silence (and a gentle hug) can be golden.
Ā©Ā 2012 Toni Bernhard
Toni Bernhard is the author of theĀ How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, winner of the 2011Ā Gold Nautilus Book Award in Self-Help/Psychology. Website: www.howtobesick.com
“Maybe if you dropped a little weight.” Lyme, autoimmune diseases, and other chronic illnesses often correlate with thyroid (metabolism) problems, and with lack of energy to move and thus burn calories. Thus, weight is often gained. So, weight gain is frequently a consequence rather than the cause!
Thats a problem i have..weight gain….frustrating enough without people making comments like that…..also what i hear is….you need to go back to the doctor fr medication…..ugh!!!!
Thanks for reading my piece. Yes, weigh gain goes along with so many chronic illness, sometimes because we’re so sedentary but more often because of other complications, like a poorly acting thyroid. Being told to lose some weight is definitely not helpful AT ALL! Warmly, Toni
A former friend who was also being treated for Lyme disease said to me: “You were never more sick than I am. The difference between us is that I’m a fighter, and you embraced the diagnosis of Lyme disease so that you wouldn’t have to work.”
Maybe brain damage from the Lyme caused her to think like that, but I don’t talk to her any more anyway. BTW, I did get a part-time job as soon as I was able and continue to work even though I’m past retirement age.
Marilyn – Wow. Your friend’s comment is not kind at all. In fact, it sounds cruel to me. Perhaps, as you say, she was not thinking clearly due to Lyme. I hope you didn’t take it personally. You know what she said was off the mark! Thanks for reading and commenting.
I am a Lyme Fighter too but I have had no luck with either weight loss or sorting out the Brain Damage – 2 and 1/2 years later after diagnosis, I am still fighting. I think it is unfair to pass judgement on other Lymies as everyone is so different. If someone has unwittingly been carrying the bacteria for 50 years in their body they cannot be compared to some who was bitten maybe 10 years before. The bacteria can do a LOT of damage in those 50 years… the person who was bitten only 10 years previously may have a weaker immune system and could even be far worse off. Some people have family support other have to ‘go it on their own’…
I think it is wonderful that some people are able to find work and move on… but be thankful for what you have and don’t criticize others. We all walk to a different drum.
I’ve had Lyme for 33 years & during the 30 years before diagnosis I’d heard most of those hurtful comments, mostly from my family and friends. Lyme and most chronic illnesses are so misunderstood. Everyday is a struggle just to maintain “normal”. Understanding that is not easy. Many days I can fake it, but I always pay a price later. The price I pay is not seen by others so the perception is that I am fine or doing better. Thank you for helping others understand the “hidden illnesses”. Unfeeling comments from others just make it worse. Grace and love are always appreciated.
Rachelle – I love what you said: grace and love are always appreciated. In my view, one of the burdens we carry as chronically ill people is that we have to be constantly trying to respond to others’ misunderstandings with grace (and love if we can). Learning this helps keep us from adding mental stress and suffering to our illness. Thanks so much for reading and commenting. Warmly, Toni
I love the “Law of Attraction” folks who don’t realize how brainwashed they are. I did NOT attract Lyme, it was handed to me by the military/industrial complex. I am NOT attracting poverty and sickness. It came to me unasked for and announced itself but the so-called Doctors ignored my pleas for help. Lyme STOLE my adulthood while I had other plans.
Sue – Yes, the “law of attraction” folks do nothing but make it harder for us to live with an already tough situation. I wish they’d reflect before they spoke. They suggest it’s our fault. Nothing could be more ridiculous as you clearly understand, and that’s a good thing because many people are still blaming themselves for being sick. You are not. All my best to you, Toni
After half my face went temporarily paralyzed from lyme/bartonella and my tongue was faltering, I thought I would keel over, and I was nauseous, my lyme doc was concerned that I might have a leaking brain aneurism. He did not want to pronounce it as certainty, said he was not going there one hundred percent, but he did want to rule it out. Well my neighbor just couldn’t be bothered to give me a ride in to the office for an MRI (after I had shared my car with her, a single mom who I wanted to help, for six full months). Her dump run obviously was much more important to her. I was so upset! What a slap in the face! My life didn’t matter to her as much as her dumprun, aargh! But the real doozie came when she asked what the neurologist said. “He ruled out brain tumor” I said .Well, you should have seen her eyes turn to scouring powder green, and the hateful stare she gave me! She treated me with disdain and snobbery ever since. She really didn’t “get it”. She really thought I was making all that up, just for attention…what an idiot. Fortunately it did *not* turn out to be an aneurism, it was just a nasty lyme attack after the nuclear leak from Japan, maybe my nervous system was on hyper-response mode as usual. I am glad to say that I am so much improved now, but I still am not out of the woods.
It’s all survivable, but ever since this experience I have learned to cue people in when they don’t understand. I start out by saying that lyme patients (and me, myself) look normal, so we are often misunderstood. Then I explain a bit, letting them know that I am not asking for attention or sympathy, but that I do feel a need to be understood. Most of the time, this has worked. In the few exceptions that it has not, I figure those people are so darned judgemental that they aren’t worth my time anyway. But that doesn’t mean that their harsh judgements don’t hurt, either. Shame on them, they are wrong! Like the colleague who herself suffers dizziness, then said to me “oh yeah, can’t you eat something that doesn’t set it off, no excuses…sleeping in is something I sure would love to do too!” I cued her in, and she still didn’t “get it”. I am writing her off. Bye!
Thanks for writing a wonderful column, Toni, this is a real service to us as patients! It’s greatly appreciated.
Toni, I love your work, and that you provide such a wonderful forum for people who feel they have been dismissed to stretch their VOCAL CHORDS! Thank you for what you do. This idea of “purpose” and keeps bugging me. It’s not even that I don’t believe in purpose, or that we can create our circumstances (to a point) but that there is something brewing beneath the surface of such comments as if to say “oh poor dear, if you only understood and could see what I see then you would be healthy like I am”, and that is devastating… that is one of the deep wounds inflicted during the course of chronic illness. This creates a little magic WALL around them so that, as long as they are well, they can believe they will stay well as long as they keep doing the “right” things. It keeps them emotionally safe I think. People don’t like groundlessness so they/we like to pretend it’s not there by making up rationalizations. It comes from FEAR, and an intention to protect the self, not malicious intent to hurt us (it helps me greatly to remember that whether they know it or not, or choose to admit it or not, this comes from FEAR and not meanness). Sometimes people fear that what has happened to US could happen to THEM and so, as a defense, they separate from us at a core level, and I think this is what leaves us bleeding and wondering what the heck just happened!! I need to write more on this to work out what I’m trying to say bc I’m not saying it very well…. LOL! You have gotten me started again!!! You always get me going!! Thank you!
Donna, you just helped me a lot with what you wrote! You said it very well! Thank you!
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sometimes the frustration is worse than the pain, because people just think that I have gained weight from being lazy.. I have never been overweight in my life ..now I have gained 30 pds. and eat 1/2 as much..I have not felt good for 6 yrs. now and I am soo tired of it.. drs. have been no help ..they think I’m crazy..tell me there is no way I can hurt in all the places I do..wish they would get it.
I feel for every one of you going through this extremely challenging disease. I have had Lyme for 10yrs officially diagnosed 3 yrs ago right after my daughter was born. Recently I have moved to a new state for treatment and I have had family members say things like “I’m just concerned that you are letting your disease hold you back from life.” While being compared to someone who has been in a wheelchair since childhood and has a degree and a job now. But, the person saying this is perfectly healthy and no job he has also told me that there is no way I could hurt as much as his shoulder does. Another family member told me since she has seen me on a few bad days when I was down that she thought I was “fatalistic?” and concerned that I was trying to die. Just for a little background I have finished 4 semesters of college since I have been sick with a 3.75 gpa and am a single mom of a 3 year old. I am getting a picc line or a temporary iv placed this week and i’m doing it alone. I think that I am doing a pretty good job at holding it together considering… I just wish that people would take the time to understand Lyme, it’s not a simple disease. When someone tells me I don’t understand their illness I tell them your right because your the only one that knows exactly what your going through, and i’m here for you. I wish someone would say that to me instead of saying i’m not doing enough.
My experiences are never-ending. I’m in my late 30’s and live with hypermobility syndrome which causes amongst other things chronic fatigue and chronic/acute pain, was mis-diagnosed for 5 years as arthritis. I have tried every form of western, eastern, natural, extreme and gentle medicine. Now with a correct diagnosis there is no cure, no meds to help, my consultant said do your best to cope. I have heard from friends, strangers, close family:
1) But you never look sick
2) Have you tried this or this…… my so and so has and it works for them
3) You are attracting illness into your life, you believe the diagnosis and you believe you have an illness, you believe you will be in pain tomorrow based on the pain you have been in and this is a self fulfilling prophecy, you need to disconnect from the pain and imagine a you’re a healthy, happy, energetic person, this will manifest if you truly believe/visualise
4) This is bad karma from a previous life
5) You are limiting yourself by saying for definite what you can or can’t do, remove your self limiting beliefs and be limitless
6) You need to self heal more (Reiki)
7) Your symptoms are based on your bad experiences as a child, when you get your negative emotions of anger and hurt out, only then will you heal
8) There must be a cure out there somewhere (when explaining there is no cure)
9) All the time you talk and think about your illness, it will get worse and worse, you need to stop talking and thinking about it to get better
10) Are you in pain now? Where?
11) You always look and act fine when you are out (I’ve learnt to put on a fake exterior when socialising to stop the ‘fixers’ and ‘are you really in pain’ people, I also socialise very little, they don’t see me when I am crying from pain and exhaustion at home alone).
12) What if you could visualise the illness doesn’t exist, that you are like you used to be, the mind is powerful…….
This comment was sent via text from my sister to me “Appreciate the offer but we both feel right now we aren’t comfortable right now with babysitting! I know you love him and are a good aunt but want you to be a little more stable with your life and get that on track right now! I am not saying this to hurt your feelings but I just want you to focus on yourself right now. The whole disappearing act over the weekend bothered us… Please don’t be mad it’s not like you can’t come see him when I am at moms.” (I slept for three days straight )
The one thing that makes me smile so hard that my face hurts after is her son. Still crying from this one!
Nurse practitioner in my doctor’s office: said my “issues” weren’t going to be believed unless I have a psychiatric evaluation. Wasn’t the first form of “it’s all in your head” I heard, but was the most ignorant approach for sure.
My doctor told me when I had horrible sores popping up from a drug reaction to Epstein Barr and Lyme that I had done it to myself….as in I had sat at home and poked myself with dirty needles to get attention. Because apparently that’s the only answer for a young 20 something woman in a wheelchair. What are we paying these doctors for?
How do I get Dr to look at Lyme disease as a potential cause? I had the classic bulls eye rash 12-15 years ago. I was recently told I may be going to Dr for attention as have been about 20 times to same clinic in 5months. If I don’t get better soon I may have to quit work and have no insurance. I want the health issues and pain to STOP.
Lyme can occur in texad
In pain, broke and heard all of above from others
The story of my life, what I haven’t master is how to ignore all this comments without affecting you emotionally! Especially when is your family, and family is supposed to be a safe zone. When everyone calls me is to tell me there a job hiring here, when. Are you getting a job, it’s so debilitating. The best ” keep living without a job! Let Lyme control your life”