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Posted 10/2/2017 7:50 PM (GMT 0)
I always get annoyed when someone says to me, "I wish I didn't have to go to work and I could nap all day."

I don't wish Lyme on anyone, but that comment is so insensitive that I want to punch them in the throat. What I would give to be able to go to work, drive by myself anywhere at all, or just be among the world and people. Before all this lyme stuff, I was a vibrant, active person who never sat down...I could not sit down, I had too much energy and ideas and things that interested me in my life to stop for a second. Then the prison sentence of lyme, and I am alone, isolated, brain is mush, body physically wrecked, too tired to do anything, but too sick to sleep....no fun.

Would you say that to a cancer patient? No? So don't say it to anyone else who isn't well enough to live their life. Gah!

But in reality, I just stand there with my mouth agape and have no response except to just take it.

What do you all say to people who make insensitive comments like this??
Posted 10/2/2017 8:03 PM (GMT 0)
I haven't had many - and none recently.


One friend hasn't been as supportive as my others' - we went out a couple weeks ago for dinner...and she heard how life is for me...and she said she had thought I was better and was surprised to hear I'm not.
Don't know how she came to that conclusion.

We had a lot of laughs, and some tears throughout our evening...and I was able to tell her about some of my symptoms...and treatment, etc.
She has a better understanding now.

People have no idea how hard it is to be at home day in and day out...trying to manage these god-awful symptoms every. single. day.
Posted 10/2/2017 8:04 PM (GMT 0)
joee -

I'm sorry this person is sharing their ignorance out loud. It is pretty common, unfortunately.

Instead of punching them ---although maybe some of them might only learn from a punch... ;) I like your question - would they say that to a cancer patient? It's reasonable for them not to understand all the details about Lyme but it's a question that might need to be asked.

I used to be surprised by this and sometimes I'm too exhausted to respond.

But on the days when I'm doing better and can deal with it I like to respond to people with:

"yes - this life of "lying around all day in discomfort, spending hours researching treatment options and troubleshooting problems everyday, going broke and living in fear with the prospect of working into my 80s because of it... is FAR preferred to my busy life of being a successful professional, socially active, living in a clean house, eating well and being busy seeing people and going places." and then I stand there patiently for their response - some ask good questions and show an interest in learning a little bit about Lyme or my experiences.

When I say it with a humble and caring smile and an understanding that they really don't know what they're talking about and probably don't intend to upset or insult me, they usually respond with appreciation for the opportunity to learn.

The others, who simply don't care or care to understand, I usually don't bother with. You can usually tell who these people are. Avoid them like the plague.

Ignorance is everywhere... but there is more generosity out there.

-p
Posted 10/2/2017 8:22 PM (GMT 0)
I've been dealing with insensitive comments for so long that they roll off of me these days. I had a horrible divorce from an ex with numerous mental issues. The bad comments started then. I learned no one really understands unless they've been through something similar, so unless they are toxic individuals, I find I can forgive them.
Posted 10/2/2017 9:18 PM (GMT 0)
"I wish I COULD go to work and stay awake for more than 2 hours."
or
"It's so lonely, I hope to get a job as soon as I have a competent body and brain not to call in sick all the time."
or
"It sounds nice, but when I'm in too much pain get off the couch, can't stay awake long enough to drive, can't see straight, can't understand anything I read, and lost my personality and most of my will to live, there's not much relaxation in it."
or
"Get the flu for 2 years straight, see how fun taking off work is."
or
if you must go the sarcastic route
"Yeah, brain-invading bacteria and blood parasites are a thrill. Be envious."
"The best part about napping all day is getting to WAKE UP from it drenched in sweat and unable to breathe!"
"I'm livin' the dream, bro. Alzheimer's at age 30. Just fabulous."
Posted 10/2/2017 11:33 PM (GMT 0)
I've been dealing with insensitive comments regarding my physical disabilities for my entire life, so most of the time I am able to let them go / ignore them without thinking twice. But sometimes the comments are from someone important to me & my life .

If I'm feeling up to it & the person is someone I want /need to have understand me ;I'll say something like : " I wish I could work & get out & do things & participate in life - But I CAN'T. It's not a choice, it's a physical inability."

Sometimes I'll even go on to say , " staying home all day ( & night) because you're too sick to do anything else isn't what you're imagining. It's not fun or relaxing . It doesn't feel like playing hooky from work does when you're healthy. It's exhausting & painful & sometimes every second of a particular symptom feels like an hour & it's all I can do to get through each one."

There have often been times that I wanted to explain & wasn't up to it or was just shocked at the persons comment in the given situation etc. and unable to respond.

Once was with a rheumatologist & I was so upset & stressed that I was physically sicker than usual for several weeks after. (& would get stressed & sicker again whenever I thought about it for months). I felt part of the reason I was so disturbed by his comments was that I'd not defended myself.

It was really negatively impacting my life & health , so I ended up writing him a letter ( several actually) with all the comebacks & explanations that I thought of after the fact. I never sent the letter/s , but it did help me to let it go.

Sometimes I think I should have sent it b/c maybe it would make him think twice before making those kinds of comments to another patient ... but in reality he probably wouldn't even care, plus it would've required too much effort for me to type it up so it was legible...
Posted 10/3/2017 12:49 AM (GMT 0)
I guess one of the blessings of this crap disease is that it serves as a filter for the garbage in your life. You literally only have the time and energy for the most important things and everything else must go, that includes people who can't empathize with your position.

At the end of the day I feel bad for people who are unable to put themselves in someone else's shoes. I'd rather be sick and empathetic than healthy and detached. I hope better support finds its way to you.
Posted 10/3/2017 11:07 AM (GMT 0)
^^^ this. Had a big fat helping of THIS today. Had to clear out all of the stuff/people that were getting in the way of me getting better. And then I did smoothy prep.

Apparently papaya and celery is GREAT for EBV. I hate both. lol
Posted 10/3/2017 2:03 PM (GMT 0)
I get them all the time from my husband! I know how you feel. I hate seeing people complain online about things I would be happy to do! School, dishes, kids, work, traffic, etc. I would LOVE to sit in traffic LOL

I'm building a thick outer skin - very slowly. I know it hurts, but it does get better with time. You're OK and we feel your pain.
Posted 10/3/2017 6:02 PM (GMT 0)
I saw this yesterday. Bay Area Lyme Foundation posted this on Facebook-

In collaboration with LymeLight Foundation, Bay Area Lyme is proud to introduce a series of support videos for Lyme patients, Lyme caregivers and Lyme doctors. This series, produced by Patient Talk is a composite of 8 hours of interviews broken down into easy to view 3-4 minute snippets on various topics everyone dealing with Lyme disease in their life will appreciate. We give thanks to the many patients, caregivers and doctors interviewed as part of this series. We picked "Dealing with Lyme Doubters" as the first video to highlight - since everyone following this page will be able to relate.

patienttalk.com/video/dealing-with-the-lyme-doubters-its-not-in-my-head/

There's a drop down menu on the right side. The video's are divided by subject. It's a really great resource for support or education.
Posted 10/3/2017 9:27 PM (GMT 0)
One of my coworkers said something similar to my wife about me. He said "what is he just tired all the time?". It was at a time when i was very bad, still am but not as bad as then, and she actually came home crying. He's only the 3rd person in 25 yearsvthst i have ever heard my wife speak poorly about. I absoutely wanted to punch him in the face and did for quite some time.

Luckily i cooled off a bit before i ran into him one day. I told him that he upset my wife with his insensitive comment. He said he was sorry and i told him not to worry about it that i explained to her that he is a knuckle dragging, skoal drooling moron who is not very smart and is just not capable of understanding these kinds of things. The look on his face was priceless.

Don't let them get you down, generally people like that are just so unhappy in their own lives that they try to bring everyone around them down. Take comfort in knowing that although they are healthy they are more miserable than we are because one day we will heal and they will always be ________. Fill the blank with whatever you like.

Post Edited (WV Mike) : 10/3/2017 3:30:19 PM (GMT-6)

Posted 10/3/2017 10:01 PM (GMT 0)
Ive always been an external communicator; therefors i have NO PROBLEM telling people just how hurtful their comments are.

My own father and mother accused me of being hypochondriac.

My one & only daughter says to me, in my times of need, "I dont wznt to get involved in an emotionally charged conversation", and "Im just too busy", or when i needed a ride home from the hospital when Id had to call 911and arrive by ambulance because she didnt answer her phone(shez married to that phone) & she sent her husband to pick me up because she had to go to work, but I was stuck there at 5am when I was just in my pj's.m

Mine own spouse works on the yard, chores, or even goes hunting then has the nerve to complain how sore he is, but says is just trying to relate to MY PAIN!!! MY PAIN that comes from doing NOTHING!!!

A church member told me I must not be praying hard enough else God wouldve healed me by now and that God doesnt want me to have Lyme disease, that Im allowing Satan to rule my life. She actually said this to me> "You're holding on to this illness for pity & attention". I HAD to set her straight on Bible interpretation!!!

Anyway, people are mean, insensitive, uncompassionate= its the human nature-sad, but true. Humans have to set their minds to be kind and self-Less!
Posted 10/4/2017 8:41 PM (GMT 0)

mcspike said...

A church member told me I must not be praying hard enough else God wouldve healed me by now and that God doesnt want me to have Lyme disease, that Im allowing Satan to rule my life. She actually said this to me> "You're holding on to this illness for pity & attention". I HAD to set her straight on Bible interpretation!!!

I've heard other catholics/Christians tell people their illness is because of sin etc. and as you mentioned this is a complete misunderstanding of the bible. If our suffering was a direct correlate to sin then the most righteous person that ever lived (Jesus) would not have been betrayed, brutally tortured, and murdered.

Also, in the book of Job, God allows Satan to test Job. When Job is plagued with misfortune, his friends insist this is because of Job's sins. At the end of the book God condemns Job's friends (not Job) for being miserable comforters and for not speaking the truth of God.
Posted 10/4/2017 9:13 PM (GMT 0)
I have one...Ever have one of your family members get right in your face with a slice of chocolate cake, take a big mouthful, and say "mmmmm!" loudly?
Posted 10/4/2017 10:17 PM (GMT 0)
I just want to say I love you all before my phone dies ( the power has been out for 90 minutos. Typical occurance here ).
Posted 10/5/2017 1:16 AM (GMT 0)
ChickenArise, aww, that's so nice! Hope u know we all love you back! Seriously, this forum is such a lifeline!

Anyhow, hope you get your power back soon! I always look forward to your posts. I used to like it when my power went out, but find that it's become a lot less fun since my Lyme took over...just like many other things... smile
Posted 10/8/2017 10:19 PM (GMT 0)
1 friend said my life was depressing her...and left...at least 3 have just disappeared. Family have disappeared...my mother said she didn't think i was even ill...the list goes on!My daughters partner told his mother and father my conditions...i have Bipolar too and the reply "so, she is not also bat crazy, she is lazy too"!
All these people have relied on me for many years when i was succesful and professional running my own businesses etc.
I like dogs...dogs are goodsmile))
Posted 10/9/2017 2:32 AM (GMT 0)
I had a hard time not exploding tbh with this kind of stuff. I'd get people who tell me I just need to start living my life (like get over it already dude!). As in, I wasn't trying hard enough, I didn't have the will power, I looked healthy so it was all in my head and I was basically choosing to be bedridden. Made me want to throw people through windows. I'm embarrassed to have gotten so angry and worked up, but people thinking I was choosing to be bedridden or having my life devastated from these illnesses was infuriating, this has been a kafkaesque hell of the highest order and I've tried my best the whole way and have squeezed everything out of life that my body will give me. Plus I consider myself a highly driven person which is actually something I always sort of prided myself on, so it was a bit doubly insulting given my silly pride. I do know if they could walk in my shoes, they'd change their tune.

It's actually something I have tried to focus on, I don't like being angry, it isn't good for me or those around me and it's not a way I want to live my life. Ultimately I try to find comfort in the fact that I'm doing my best, most people can never truly understand this experience and I try to find forgiveness, or at least find a way to forgive their ignorance (or even meanness when the comments strive to be deliberately insulting). Most times people say this because they think they are somehow being helpful, but of course yes some do it because they resent you or want to hurt you. In the end I can only control how I conduct myself, and hopefully I can keep persevering with as much dignity as I can while still trying to strive to be a decent person.

It's gotten easier as I've gotten better, before when I felt imprisoned by this illness in every aspect of my life it drove me crazy to hear people negate my experience. Some thought I was milking it and cakewalking when every minute of every day year after year my body throttled me with symptoms and it took all I had to grind it out day after day. Going through that and people perceiving you as overly dramatic or just not tough enough is mind-blowingly insulting. People don't realize how tough it is fighting through these kinds of experience and the suffering it entails.

I hope you can find whatever helps, whatever can help you maintain peace and strength through this experience. We have to find ways to stay as mentally strong as possible. Talking with others who "get it" has always been helpful for me, which is why I love this forum so much. It's picked me up many a time I've been down, not to even mention all the knowledge and things I've been exposed to because of the members here.
Posted 10/9/2017 2:46 AM (GMT 0)
Apropos the original question, how to respond? If I was in that situation now I'd try my best to respond vaguely along these lines, with as much kindness and calm as I could muster:

"I'm sorry you perceive it that way. This has been a very hard experience for me, and these illnesses can be incredibly difficult and incredibly difficult to recover from. It is hard for many to understand because it is an invisible illness with many silent symptoms and moving parts. I'm trying my best. I'm happy to pass on information if you'd like to learn more or wish to better understand what I'm going through." (that last part only if you are wanting to make that offer to take time to try to share info and if they seem like they'd be interested)

Also, I'd add that you don't need to justify yourself or your experience to anyone either. That completely depends on you so there is no need to elaborate if you don't want to. As hard as it is when something like this happens, whatever choice you make I'd try to take the highest road possible and try to avoid blasting them with anger (even though it would be satisfying, in the moment). The person you cite sounds more like they are talking out of ignorance which in my book is more forgivable even though it is still deeply hurtful.

Post Edited (sebreg) : 10/8/2017 8:55:03 PM (GMT-6)

Posted 10/9/2017 3:23 AM (GMT 0)

bmoberg337 said...

mcspike said...

A church member told me I must not be praying hard enough else God wouldve healed me by now and that God doesnt want me to have Lyme disease, that Im allowing Satan to rule my life. She actually said this to me> "You're holding on to this illness for pity & attention". I HAD to set her straight on Bible interpretation!!!

I've heard other catholics/Christians tell people their illness is because of sin etc. and as you mentioned this is a complete misunderstanding of the bible. If our suffering was a direct correlate to sin then the most righteous person that ever lived (Jesus) would not have been betrayed, brutally tortured, and murdered.

Also, in the book of Job, God allows Satan to test Job. When Job is plagued with misfortune, his friends insist this is because of Job's sins. At the end of the book God condemns Job's friends (not Job) for being miserable comforters and for not speaking the truth of God.

Hi, I just want to let you know that if a Catholic said that an illness or disability is because of sin, they have no idea what the Catholic Church teaches. They definitely don't teach that. I have only heard one Catholic person say anything like that. He was teaching at a Catholic school and said it to his classroom of students. He really believed what he said and stood by that belief, so he was fired because his beliefs obviously didn't line up with what the Catholic Church believes. Anyone that blames an illness on someone's sin or the sins of their forefathers are just idiots.

Please know that I'm not trying to correct you. I'm sure you've heard Catholics/Christians say these things. I just want you to know that they obviously don't know their own religion's beliefs. I agree with you on all points. Christ would never say that someone had an illness because of their sin. (Sigh.) It makes me feel even more ill when I hear this stuff.
Posted 10/9/2017 3:29 AM (GMT 0)
Babsbunny - "I'm livin' the dream, bro. Alzheimer's at age 30. Just fabulous."

PRICELESS.
Posted 10/9/2017 3:43 AM (GMT 0)
I just want to say that I'm so grateful to have found all of you. So many of you are putting into words the thoughts in my head. No one, not even the people closest to us, can understand how devastating this disease is unless they have it themselves.

You really are a comfort, and I don't feel so alone anymore.


You know, I honestly think most people are just ignorant or in denial when they say this stuff.

Did anyone see the recent episode of "American Housewife" when the mom was trying to find an excuse for her rotten behavior? One of the excuses her friend told her to use was, "I have Lyme disease." At first I was in shock and didn't know whether to be mad or what. After thinking about it a while, I realized that on the whole it's positive. At least it's being mentioned on a major network during prime time. I think awareness is key.

I'm very blessed to have a supportive husband, but it even took him years to really accept the way I have to live now. I can see why he was in denial because all of the pressure may someday be on him to be my caretaker. That can't be easy to digest. Each week it seems that I find one more thing that I can't do because of Lyme, and he has to see me get upset. I know he feels helpless because he's a fixer.

I've given up on family and friends who don't understand. Honestly, some of my closest friends are now the people in my doctor's office and the cashier at the drugstore. I see them a lot more than anyone else! Lol!
Posted 10/9/2017 3:48 AM (GMT 0)

sebreg said...
I had a hard time not exploding tbh with this kind of stuff. I'd get people who tell me I just need to start living my life (like get over it already dude!). As in, I wasn't trying hard enough, I didn't have the will power, I looked healthy so it was all in my head and I was basically choosing to be bedridden. Made me want to throw people through windows. I'm embarrassed to have gotten so angry and worked up, but people thinking I was choosing to be bedridden or having my life devastated from these illnesses was infuriating, this has been a kafkaesque hell of the highest order and I've tried my best the whole way and have squeezed everything out of life that my body will give me. Plus I consider myself a highly driven person which is actually something I always sort of prided myself on, so it was a bit doubly insulting given my silly pride. I do know if they could walk in my shoes, they'd change their tune.

It's actually something I have tried to focus on, I don't like being angry, it isn't good for me or those around me and it's not a way I want to live my life. Ultimately I try to find comfort in the fact that I'm doing my best, most people can never truly understand this experience and I try to find forgiveness, or at least find a way to forgive their ignorance (or even meanness when the comments strive to be deliberately insulting). Most times people say this because they think they are somehow being helpful, but of course yes some do it because they resent you or want to hurt you. In the end I can only control how I conduct myself, and hopefully I can keep persevering with as much dignity as I can while still trying to strive to be a decent person.

It's gotten easier as I've gotten better, before when I felt imprisoned by this illness in every aspect of my life it drove me crazy to hear people negate my experience. Some thought I was milking it and cakewalking when every minute of every day year after year my body throttled me with symptoms and it took all I had to grind it out day after day. Going through that and people perceiving you as overly dramatic or just not tough enough is mind-blowingly insulting. People don't realize how tough it is fighting through these kinds of experience and the suffering it entails.

I hope you can find whatever helps, whatever can help you maintain peace and strength through this experience. We have to find ways to stay as mentally strong as possible. Talking with others who "get it" has always been helpful for me, which is why I love this forum so much. It's picked me up many a time I've been down, not to even mention all the knowledge and things I've been exposed to because of the members here.

This is great. Thanks for writing it.
Posted 10/9/2017 3:52 AM (GMT 0)

bmoberg337 said...
I guess one of the blessings of this crap disease is that it serves as a filter for the garbage in your life. You literally only have the time and energy for the most important things and everything else must go, that includes people who can't empathize with your position.

At the end of the day I feel bad for people who are unable to put themselves in someone else's shoes. I'd rather be sick and empathetic than healthy and detached. I hope better support finds its way to you.

This is exactly how I feel. I'm showing it to my husband and teenagers! Perfect.
Posted 10/9/2017 4:14 AM (GMT 0)
Having MH illness, i have been used to listening to rubbish and watching sterotypes make life harder for people with functioning MH over the years, but at least the thought of me rampaging like a dog with rabies has controlled some face to face conflict smilewinkgrin
I recently moved to an area which is a small village and a recent decline has been from people actually making a point of the disgust they feel regarding me having a mobility car parked outside my home! They apparently felt like i did not deserve it and showed their feelings by ostrasising me....it has been horrible and cruel BUT what they didn't know is that the car was going back because of my blurred vision and cognitive probs and the hours i have spent crying because of the manner in which people are ignorant and cruel has only made me realise that these problems are more to do with them, than me. Ignorance is an epidemic and lack of empathy is the norm now but i would rather be lying on my back in pain and ill than be part of that norm! nono
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