“”Don’t become your illness.” It is so painful and disheartening to hear. Trying to explain to someone what it’s like to be a soul trapped in a body that perpetually manages such a high level of pain, to have a mind that attacks itself with every thought it produces, to constantly live in anxiety and to lose the talented pieces of yourself that are the most God-given and true, is almost, ALMOST as exhausting as the Lyme. It is the walls of darkness that keep us from experiencing the full beauty of this world. Us with Lyme, we didn’t harm ourselves, make poor choices, or consume bad things. It’s not cirrhosis or type ii diabetes. We got bit by ticks while being in the wilderness. To those who suffer, God’s presence is forever within you. And to those who lead healthy, disease-free lives, you are the lucky ones. We didn’t ask for this.”~Sara
I am opening with this testimony by a fellow Lyme sufferer, because this post is all about the questions and comments that hurt…
Living life with a chronic illness is hard enough; it takes and takes and never gives back. But what is worse than the daily agonizing struggle, the pain, the isolation, the desperation for answers and trying to get better… Are the words and reactions from others who do not/cannot understand.
Granted some hurtful words come from a place of naivity and are not ill-intentioned, but some people do choose (no excuses here please) to belittle, downplay and deny what they cannot “slap a label on” or grasp the concept of, or fit into a comfortable pre-conceived catagory. Somehow we have become a society of labels and categories and if someone is suffering from something that someone doesn’t have a “label” or fit our ideas of what “sick” looks like, we seem to think it is easier to accuse the sick person of faking sickness or having a mental problem, not getting appropriate treatment or doing something wrong; because of course “there is no such thing as long-term illness without quick-fix cures, right?” Why is this? Is it because people cannot accept that there are illnesses without straightforward blanket treatments, without instant textbook answers? People seem to need everything to be like a math equation; A + B equals C, and people seem to need the “C”; meaning they need the treatment equation to make sense…
If you have cancer you get chemo/radiation/surgery.
If you have Diabetes you get insulin and change your diet.
If you have allergies you take antihistamines and manage your environment.
If you have Chronic Lyme you…….well that’s complicated.
Don’t we the chronic Lyme community hear it every day?
“Why aren’t you getting better?”
“Have you tried this?”
“It’s all in your head.”
“You just need to exercise and get out and you’ll feel better.”
“You are obsessed with being sick and people are sick of hearing about it.”
Folks I/we get it. What we live through from an outsider’s perspective is confusing, confounding and perplexing at best. What is sad that approximately one out of every four Lyme sufferers I talk to has been alienated/disowned/abondoned by close family and friends. I don’t know maybe the statistics are higher.
I just wrote the other day on what it’s like to live with someone with chronic illness (Living With Someone With Chronic Illness), and recently also about a day in the life of a chronic Lyme sufferer (Confessions Of A Functioning Lymie) which have already helped many people in understanding this life. Not that I’m the only blogger out there, but I try.
Anyway a fellow Lymie and friend asked people with chronic illness on her Facebook page to post things that had been said to them that were hurtful and frustrating in regards to their illness; she got a huge response. It brought tears to my eyes to read through them and see all the hurt that was piled on to these poor people who are already suffering so badly. It hurts so much because we are desparate to get better, being chronically ill is NOT fun and degrading comments is literally adding insult to injury. I asked permission to re-post the FB comments here to try and raise awareness, so here we go…
“I hate the people who are emphatic that you can get better by doing things they recommend (as if we haven’t been practically scratching our eyes out for years looking for answers and are under the care of expert doctors). I have been told I should drink lemon water every day and get massage..(by the same person) and this should get me better.” Also (said to me by a doctor, in several lectures over several different appointments) that I just need to get out there and meet someone, that being in a relationship would energize me and help me not to feel so bad. “~me
“The most invalidating is in response to hearing of my Lyme diagnosis is simply, “So?”” ~Megan
“It all from within…. Just visualize yourself healed and eat better. Why can’t you just do that?” ~Cody
“But You Don’t Look Sick! It’s all in your head . Don’t claim it. ” ~Charmica
“Are you sure you are not just in need of some counseling or a psychologist?” Oh and, “So when did the doctor say you could expect to be over this?” ~Amanada
“Everyone has problems.” Then compare it to sprained ankle or a bad grade on an exam, or something similar. The fact that extended family was often the source of these comments was especially hurtful.”~Sarah
“Why aren’t you better yet?” ~Sarah
“Oh yea another BIG peave of mine “I know someone who had lyme and he/she is fine” (me to myself they either caught it early, are in remission or probably really not “fine”) I ask them what stage? They never know – and I say, “you know the difference between stages of cancer?” (Trout-eyed answer of Yes) …well you’re friend might have caught his/hers early/stage one… consider me as late stage metastasized”… ~Linda
“Why is your treatment not working?? Umm let’s see I just started two weeks before this goon asked me that.”~Melissa
“Lose weight and u will feel better”~Nikki
“My neighbor knows we have Lyme. She asked how my daughter was doing, my daughter had psychiatric Lyme, I said much better than a year and a half ago. Neighbor said it must have been a phase she was going through. Really?? Neighbor is an M.D.”~Valerie
“I was told by the pharmacist when I was picking up my huge bag of medicine “well at least you look good!”~Tammy
“Could be worse, you could have cancer. Your still not better?” is another one..ppl dont understand what the word chronic in chronic illness means .. ~John
“”I think your a hypochondriac” said by a good friend too. ” Are you using drugs?” Said by a family member. Ugh thank god the full moon is preventing me from thinking of them all! I block that crap out then block the people who say these things out too. Lucky I have a pretty thick skin but still… It can hurt. They have since apologized to me but it still hurt.~Michelle
“From my occupational therapist sister when she was criticizing me when I couldn’t go to her kid’s birthday party when I was herxing my brains out, “I have cancer patients who do more than you!”~Denise
“Or ….. Has treatment worked yet then a few days later…. Has treatment worked yet? Then a few days later …has treatment worked yet??…… This one drives me insane!! Like stfu!!!!!!”~Sandy
“Aren’t you better yet? Why not try xyz you’ll feel better positivity and mind power can heal you!…. Ugh! I have tons more! 😩😳😡 xx”~Joanne
“”It’s funny how im always reading on fb that you don’t feel well, but then I see you and you look fine…”.Uuuhhh that’s because I only leave the house when I feel well!”~Misty
“It must be nice to sleep in everyday. (!!!)”~Amy
“”You look good though, you don’t look sick” “Well, at least you don’t have cancer, could be worse!””~Chloe
“What a waste of money – all you need is antibiotics!” Like you know!.”~Charlene
“But your not dying so your fine.. Someone close to me always says if I went to a better church I would have been cured by now.”~Alyssa
“I’ve heard many things. Like… “I would say I hope you feel better but we have given up all hope” that was said by a nurse. When I was dying in the hospital I was told “You’re young and healthy you will bounce right back”. “Maybe you need to see a psychologist because It could all be in your head”. When I was in a wheelchair and couldn’t even stand or barely talk I heard “Just go out and have fun with your friends you will be fine”. The list just goes on…. and I was told most of these things by people in the medical community.”~Jenna
“Stay off of Facebook and the Lyme groups and you will get better”🤔~Angela
“I’m cracking up, but hurting inside for all of us and the soul crushing words we hear from our family, friends, Christians, strangers, and our own Lymies and Moldies.”~Roxanne
“I know they probably mean well, but “I wish I could do more for you or help you out somehow” when they damn well know that I do need help, physically and financially, and there are a few that are very able, but won’t. Just empty words, meanwhile they are buying themselves trips to wherever the eff, while I couldn’t barely pay for my trip to bc to see my Lyme dr. Immediate family, by the way. Another one is “don’t let yourself get lost in the label of it. You’re not your disease.” So deep…”~Carli
“This from a neuropsychiatrist after telling him i have chronic Lyme disease which has caused my depression and anxiety, after being referred to him by a neurologist. “So do you believe in aliens too?” This from a highly specialized doctor who deals with mental health issues!”~Sharon
“So you don’t work or do anything at all?.”. ” if you actually did something rather than just laying around all day you would feel better”B“you’re just depressed, just get outside get some fresh air you’ll snap out of it.”.. “You’re just being lazy”~Grant “you just need to go back to work and be around people” “i dont understand why you cant get out and do anything and live your life” “you’re not even trying” <— one of my favorites “you’re taking too much medication” “you’re not doing enough” “you need to make ______ (fill in the blank) a priority” “are you sure your medication is working? you always feel like shit” “who told you that you have lyme? it was probably a false positive, igenex is crap – less sensitive than standard testing” …that coming from a neurologist recently! “why cant your dr figure this out?”“so when are you going to get better” “there’s nothing wrong with you, you just like attention” “i know someone with lyme, they did x,y,z treatment and is fine now, you’re just being dramatic” “have you tried…….?”…….so many ignorant statements i feel like i’m forgetting some of the best!”~Betsy
“I have so many – but one of my faves was from a Dr during my first of many hospital asdmissions. When they couldn’t find the reason for my sudden onset neuro problems, the Dr asked ‘are you sure you haven’t forgotten to tell us anything? like – have you been hit by a car recently??’ That was the point when I knew that life with Lyme in our current medical system was not going to be easy lol!!” ~Laura
“What is it like to be able to stay home, not work and sleep in all day? GRRRRRRRR”~Linda
“”do you use your disease as excuse?”-no ,i like to feel like dying. lol”~Robin
Readers I had to stop because there were just too many comments and many were repetitive, but you get the idea.
In closing I am left with not much else to say, but I wanted to share a link from one of my favorite Lyme sites on being in the life of someone with chronic Lyme