Some Honest Thoughts On A Sunday Afternoon… When Life Reshapes Hope

I have no answers today, no deep wisdom (I don’t think), only a seeking mind on how to perceive life as it stands and on expectations for the future.

I was thinking that our hopes and dreams are built on a foundation of what we feel is possible. We do not tend to realistically hope for things that are not in the realm of possibility; I guess if we do we call them pipe dreams. But when long term illness and passing years rob you of the possibilities that are still reachable for a “normal” person, how do you dream? What does Hope look like now?

Of course the first dream for anyone that has been sick for a long time is for health, and of course health is the gateway to everything else we want in life: relationships, activities, happiness, success, travel,  family…LIFE. 

Now chronic illness looks a little different for every individual; For myself I am immensely blessed that I have come a long way in my (5?) years of treatment since Lyme diagnosis and there has been a lot of improvement. But the struggles continue and I may continue to struggle with autoimmune and other conditions for the rest of my life. So as my “younger” years continue to diminish like a fading horizon line, I am wondering how to rebuild hopes that are now built on a different foundation of what is possible.

I had an emotional reshaping of my hopes with this last downturn in health (Relinquishing hope), and a lot that I had been holding onto for many years got torn down. I have been living in that place of rubble for several months now and I guess I am questioning whether rebuilding the hope tower is worth it. Of course it will look very different than before and be much smaller, but right now I’m not sure what to build it with. Or should I? Is that my job or God’s? Honestly I’m at a loss. I have never stopped believing that my future and hope is in God, that He has a reason and purpose in everything He allows in my life, but what His plans are (obviously) are vastly different from anything I ever envisioned.

So here I sit on a Sunday afternoon in an empty house with a silky terrier puppy for company (who is under my care for the weekend), feeling quite lonely for some reason and pondering all of the above and maybe letting myself cry just a little. I am looking at turning 38 the last day of this year, and the years don’t slow down. Life for the chronically ill is like a treadmill; running in place and never getting anywhere but expending energy all the same and there is no end for exhaustion. 

So friends, as I have said goodbye to children, to love, to independence, to fulfillment, to financial stability, to success, to travel, to normalcy, and all the perks that come with those things…. how and with what do I rebuild my hope tower? We shall see. 


The Things That Slip Away….

My posts usually start with a moment of introspection; today is no different. I was standing in front of the mirror and happened to look at my ears, and what I noticed (not for the first time) was that my piercings have grown in. I sought to try and remember the last time I wore earrings and surprisingly I realized it may have been as long as a year or two. The significance of this is that it is just one more thing that would in different circumstances be just part of a normal routine… a no-brainer part of life. 

I don’t think many people understand how drastically different the day to day life of a chronically ill person is and I am realizing what is lost is in the small things. You see people may understand when illness keeps you from not attending events, not being as social, tiring out easily, the limited diet and all the rest, but I think they may not comprehend how the life perspective of an ill person is so very different and how daily life has been stripped to it’s bare bones and what is lost is all the small things. 

If it’s “extra” it doesn’t happen

So I’m a girl and many things I may mention are specific to my gender (after all guys let’s admit we are higher maintenance). 

My routine when I am going to leave the house is not what it once was. I remember the days when I spent more time on my hair, when I wouldn’t leave the house without full makeup, when I actually put thought into an outfit and (gasp) yes used to have a decent fashion sense.

This isn’t true anymore for a few reasons; apathy/lethargy/indifference/listlessness/dispassion/detachment… fatigue. It is that thing I have talked a lot about I call survival mode. You just shut down and live one foot in front of the other, shuffling, not running or thriving. I am learning that beyond just chronic fatigue and brain crud there are some real physical reasons for this apathy/detachment that accompany long-term illness, but that’s not the point of this post, rather it’s the effects of this on your life.

💠I can’t recall the last time I used a flatiron or curling iron. 

💠I almost never wear lipstick.

💠I almost never think about jewelry, much less bother to wear it.

💠I do pretty minimum with makeup just enough to make sure I don’t look heinous. *

*accept for some doctor or IV appointments, when I don’t care so much about looking heinous.

💠Personal hygiene suffers. No I don’t mean I don’t keep clean, but anything extra like plucking eyebrows, shaving, taking care of my nails and other stuff doesn’t happen.

💠My shoes only get changed and replaced when they have holes in them. 

💠I haven’t enjoyed clothes for years and I don’t like much less enjoy anything I wear. Clothing for many years has been about nothing but covering up my edema and the parts of my body that betray me. And it’s not like I have extra money to buy much in the way of clothes anyway. 

Confession: I am never comfortable in my body and it is almost it’s own entity that I am tied to with no release. It’s constant pain in varying degrees, the water retention is a constant source of discomfort and embarrassment and even if you think you have my full attention when I’m with you, you don’t. A piece of my mind is always occupied with my physical self and the aforementioned manifestations. 

There is probably a lot I’m not thinking about right now, but I guess I am just getting to convey what bare minimum looks like for the chronic illness sufferer, and how there is no such thing as fullness or completeness, everything is only a measure including your access to yourself. 

We are all only pieces of a whole, percentages of 100, slices of a pie. You may not see much of us or get 100% when we are with you, but we don’t get that from ourselves either. It’s all those little things that have slipped away….


Are We All Crazy?/Sanity Is Relative

I think “crazy” is not so easily definable as we think sometimes and has levels and facets, different causes and effects. I think we can all dip into “crazy” from time to time in moments or seasons when our view of the world is warped through the lens of something that throws us for a loop.                                                              Another definition of crazy is “not in one’s right mind.”

I have asked this question of myself many times on days when my brain and emotions betray me, when my view of the world and my situation in a given moment seem warped; “am I crazy?” Not all the time of course, and not as a constant, but there are times when I know I’m not in my right mind. 

Now we know that Lyme and coinfections cross the blood brain barrier and can literally infect the mind, but I think many times it is more complicated and more subtle things going on than even those factors. You see the entire life paradigm is different for people with certain chronic illnesses and not in rhythm with most people. The box we live in and our life experiences are very different, especially after living this way for many years. So I guess it makes sense that we are not always normal. After all, normal is a sliding scale based on majority.

The idea for this post came lying in bed last night after seeing posts from other Lyme/Chronic Illness sufferers on Facebook and thinking that what we suffer physically, cognitively and emotionally can make our viewpoints and behaviors pretty skewed:  I see desperation, scattered emotions, TMI, prolific postings, saying things publicly that shouldn’t be said, weird viewpoints that seem to come from places of isolation and disconnection. But I sometimes do it too, and honestly I struggle sometimes with how to balance being honest and “real” in the moment and when it would be best to keep stuff to myself. What’s the answer? I don’t know. I do try and consider my audience; my blog and Lyme page is primarily for fellow sufferers and those that will come after us, to know they are not alone. It is also for friends and family of the ill to get a window into this world. But from time to time I do regret some things I put out there, primarily to my healthy friends, I really must come off as cracked once and a while. I start to second guess myself especially if I get no response to texts or emails and I think people must have a negative opinion of me.

 But if we are talking brain stuff, even beyond Lyme and coinfections there is so much that effects the mind it is incredible. Honestly when I consider the complexity of our brains and the 100 trillion (yes, trillion) neuron connections in our brain I am in awe that the chronically ill with all that we are dealing with are not stark-raving mad. Really  We are fearfully and wonderfully made.
I had two doctor appointments this week and even though these two brilliant physicians come at treatment and diagnosis from different directions the conclusions are compatible. I cannot even begin to repeat the science and biology that was explained to me by these two doctors who can talk complicated biology and genetics like most of us do daily English about what is going on in my body, but I remember a few things: Pooling dopamine in my brain, dysautonomia, receptors not communicating, parasympathetic nervous system not doing its job….. But what is great is to get validation on the feeling of “disconnect” and yoyo emotions (aka crazy) and knowing that there are real physical reasons behind it. This also helps me understand the ebb and flow of having cycles where I don’t feel in my right mind and not knowing why I feel more normal on some days than others. 
So what’s the point of this post? Not sure. But maybe if your chronically ill friend that “looks fine” doesn’t always seem rational, maybe they are experiencing a little slice of crazy. 


Living a half life

It’s 5am, I’ve been up since 2:30. Another night of insomnia where my mind and my body are betraying me again. My brain won’t shut down, and I’m having waves of heat, systemic irritation and an upset gut. My buddy edema which never leaves or forsakes me is also having a great party.  I have to get up at 7:30am for work and I am hitting a wall right now physically, mentally and emotionally. 

How do i keep going on? How much more of this can I take? And with this emotional crash comes all the old hurts and devastations, anger, garbage and the “lies” that are really true but just a matter of perspective (is my liver causing me this crisis?): I am such a waste of a human being. I’m a black hole in a world of people who have value. My health has cost about 100,000 and where am I now? Am I living and thriving? No. Do I believe the doctors that say they can help and keeping pouring money out while I still live a half life and feeling like crud, or would it be better just to stop everything and give up?

My body is angry. It likes being angry. It likes to punish me for every bite of food I eat. It likes revenge for any bit of fun I have or energy I expel…. The only difference is in degree. So I made myself soup tonight all healthy and diet friendly, save maybe for garlic. Is this the way it’s always going to be? A night of sleeplessness and misery for something stupid like eating a little garlic? 

Why won’t the fluid retention/autoimmune/pain/fatigue get better? Is it mast cell like we are exploring now? Is it lymph virus? Toxins? Liver? Kidney? Pancreas? Spleen? Leaky gut? Celiac? All of the above? Parasympathetic nervous system?….

I have been told all of the above, treated for all of the above and more (and we’re not even talking about the Lyme and coinfections anymore). 

What hurts right now is thinking about all the normal people who live “whole” lives and don’t know what it’s like to live with access to  pieces of yourself, to never be whole or wholly alive. On your good days skating by at 70%, having to choose between obligation and everything else that makes up life. Obligation always wins and then years of your life just pass by and you find yourself in the south side of your thirties and possibilities for the future keep narrowing with every passing year until they are a pinhole and the things you have never done and never experienced far outweigh what you have, and I’m not even talking about big bucket list stuff… I’m talking about life experiences most take for granted.

A tear just fell on my pillow. I know tomorrow is another day and I know realistically I will not be so negative when I’m not out of my mind with lack of sleep, grief and discomfort. It’s just tough as I am getting another wave of heat and agitation thinking about a full day of work on an empty battery…


When You Find You Are U.I.I.S. (Undatable invisible illness sufferer)

This one’s for the single ladies (or gentlemen) who find themselves not only chronically sick, but chronically single.  I almost titled this post “girl interrupted”, but for me it’s not like I ever had a steady healthy life to interrupt, it’s more like health troubles have been the gremlin to the airplane of my life since my teen years.

Tonight for reasons I cannot even reconcile to myself, I started watching one of those “reality” (cough) dating shows tonight. I really hate most of these shows because they are not anywhere close to reality, the men tend to be immoral, shallow, narcissistic… The women are trashy, vacuous, desperate, catty….. 

I will only say I am watching (hopefully) a slightly better one on A&E, but still… This behavior is unforgivable. As I watch these people who for their own various reasons subject themselves to the world of online matchmaking, it made me think of loneliness and desperation and the lengths people will go to to find love and companionship. 

Being chronically ill can be incredibly lonely, whether you have close family or not (thankfully I do❤️). And like I have talked about in past posts most C.I. People see both friends and family walk away as illness goes on. Even if you are somewhat functioning that doesn’t mean that dating is easy or possible. Most people have avenues to meet others that would fit their criteria for a significant other. But what about the chronically ill? Even for the “functioning” chronically ill this may be close to impossible.

I function; meaning I am not bedridden and I can hold a job, that doesn’t mean every day isn’t a struggle, but I do. But functioning in what’s required of me means sacrificing everything else, and a lot of the time there’s not much left of me. What is hard to navigate is that I seem to have a few months every year when things seem pretty good; I have better energy and start being social again, being able to exercise, and feel reintroduced to my own humanity. It’s in these times I think “well maybe I can start to think about finding someone”, but then inevitably things take a dive again and I go back to survival mode, bare basics, just getting by. For me I took another dive right at the end of May and I had to start saying no again to social activities and almost everything outside of working. 

How does one date a hermit? In my personal experience I guess they don’t.



Firstly you would have to actually meet someone. But how if you don’t go out? There are no weeknights out with friends. There are no group social activities. Church attendance may stop. Any weekend activities like hiking or day trips may be too much. And what if you feel like you both look and feel like crap and just the stress of even thinking about getting yourself presentable and putting on a good face is too much? It’s so much easier just to sink back into isolation because self-care and life period is enough to deal with.


If you are chronically ill it is exhausting being you, how much more so for those closest to you? I see how close family is affected by the ones they love who are ill, and it’s a horrible strain, especially when there’s no end in sight. But these people already know and love us. It takes a long, long time for new friends that come in to my life to “get it”, even the ones who are sweet and understanding have a hard time grasping that what are normal activities for them, even their daily routines, are not apart of my life and not possible. It takes people time to see that while your body may look okay from the outside it serves as your prison of pain and fatigue. 

But how would you approach a possible new partner with your life? (We are assuming that somehow you have made it past the first hurdle of actually getting out). I mean, I wouldn’t want to date me! I wouldn’t want to deal with someone who is always going to say no every time I ask if they want to go out and do something. I would get frustrated when I would want to talk and visit and they are just shutting down at the end of the day and don’t want to talk. I wouldn’t want to bend my life around someone who can’t eat out, can’t be active, would inhibit me at every turn.                       I wouldn’t want to be tied to a person who could never fully support themselves and who would drain me financially with medical bills. I would tire of all the health talk, all the time.

Run boys! You don’t want this.


I am not present for other people the way I want to be, a lot of the time I am exhausted dealing with me. I do try, I am an uber-communicator and reach out to others all the time and do the best I can to support others in their struggles and try and be diligent in prayer for my friends and family. But I can’t imagine having a spouse and trying to be there in the capacity that they would need. I may not be able to hold up my end in a household, or relationally. 

More than that when I am going through a hard time physically I am fairly aware that I go through not quite being myself mentally or emotionally as well. Whether it be more inflammation on the brain, or toxins or whatever, I am well aware that my ability to rationalize or consistently think clearly is affected. I also lose the creative and motivated sides of myself. So in a very real way I am not fully myself.

Back in December I went to hang out with a new friend one-on-one for the first time (just a friend) and later he said that he felt he had to drive the conversation. Firstly I was a little a nervous, but what he didn’t know was that although I was in a better cycle with my health,  I was in pain, and had some brain fog… That’s the worst because you are searching your mind with what to say, proper responses, and adding new threads of conversation, all the while using a micro machete to cut through cobwebs in your head. You may seem okay and even fully alert objectively, but they don’t know you are fighting through a few obsticles to put on a normal persona.

Friends that have known me a while can tell a definite difference between clear-headed me and me on the days things are foggy. You see if you don’t know me it looks like my personality is different. If I ever seem quiet and a little shut down its because I literally am, but it’s not my personality or choice. 

So how do you begin a new relationship like this? Well if you figure it out let me know.


So thankfully although I have days here and there of longing and loneliness, something broke in my spirit with this last round of ill health and I am no longer looking for marriage and family… It just doesn’t seem possible. Can God make it happen? Yes I know He can, and if He drops someone on my doorstep (and you know it has to happen this way because I don’t get out) that would be an unexpected joy.

So a shout out to my fellow U.I.I.S.’s, for now we will just hunker down, survive, take care of ourselves and (for me) serve God the best I can with what limited spoons I have. 


❤️Facebook❤️ A Window To The World

Well love it or hate it we are over a decade deep now into the online social network that has taken over the world. And I wonder… What did we do without it? Yes yes I know some people still refuse to have a FB account, some people get frustrated and deactivate it, some people complain that it has taken the place of “real” interaction: And if you hate it that’s totally fine, because Facebook is highly subjective; It is made entirely of who you friend, what you follow, who follows you, what  you choose to post and how people respond, and visa versa.

 You want an online boxing ring? You got it; just post highly controversial and political stuff and rant and rave and argue with those that disagree. You want just a way to communicate with a few chosen friends and family members who you don’t see often enough? No problem; keep your circle small and keep subjects personal. 

This may be a slight over-simplification And I am not saying that this formula is perfect, or that negative things won’t happen in the FB universe, because they do to everyone at some point. For example, I got viciously attacked recently just for re-sharing a news story on a hot topic, I didn’t voice an opinion mind you simply shared a news piece… And someone who I hadn’t seen in person in years ripped me apart and actually called me human scum 😔 Wow. Needless to say that person is no longer my “friend” and has been blocked.

But getting to the point of this post: I opened my WordPress app lying in bed this evening prompted to write this because right now I feel like poo poo; Despite waking up late on a Saturday and taking a good two hours to “get rolling” I only lasted several hours before my body and brain just started shutting down and I had to go take my (currently) daily nap. I woke up and it was after seven pm and I’ve done almost nothing today and still feel too tired to do anything this evening. So (of course) I hop onto Facebook to see what the rest of the world is up to (I admit to logging on multiple times a day). But there they all are! Living! doing stuff! being normal… There is a picture of a friend’s new born baby. There is a post and picture of a friend’s new craft space. There are photos of a friend and her kids having a great day. There is a funny video of a cat 😆 Posts, upon posts, upon posts, of life happening. And of course for those that share my world, there are the Lymies; their petitions for prayer in their struggles, questions about new treatment protocols, brave self-videos letting it all hang out there publicly to raise awareness and/or to cry out for help, to ask for understanding…..    And after spending some time interacting, liking, reading, messaging  and sharing, I thought “what would I do without Facebook?” 

Over many, many years of illness and ups and downs (though focusing on the downs for the point of this blog) Facebook has been my window into life itself; I can’t even count the accumulative time that must add up into years of just sitting in my room, on my bed, isolated. I am here all the times inbetween working hours and (those up times when I get to do stuff with people) this is where I spend my life. In an approximate 10X10 room alone. 

I have heard personally from people who suffer from illness or just plain lack of funds how FB makes them bitter seeing all the “positivity” and observing other people always seeming to be doing things and going places. I have to admit before God worked on me in this area of my life I used to be horribly bitter and in a constant state of grief over everyone else who got their normal lives and got to progress through the normal stages of life while I seemed to be left behind in a time capsule, only it was the cruelest kind of capsule because life passed me by but I still aged inside with none of the benefits. 

Long story short, God did a work in my heart in repenting of grief, discontent and mourning and stop giving every new day over to negativity. I will quickly say that I do still have days like that, but they are no longer a state of being and they don’t linger if I give myself back to the Lord.

Where was I going with this? Oh yes, so Facebook has become my way of seeing and talking to my friends that I don’t often/never see and staying in touch with people that would otherwise be lost forever. Like That event I was invited to but couldnt attend? Well there on FB are photos of all my friends who were there and what happened. I can still feel a little apart of those things I couldn’t be at, and it is actually scary for me to think how dark my world would be without FB. 😱

You know what else? For the chronically ill community FB is nothing less than completely empowering! We have forums, we have pages, we friend each other, we offer support and love and help to each other in our suffering and offer empathy where no one else could understand. I think what is one of the most amazing aspects (when you are sick with something that is so hard to treat and misunderstood) is the openness of fellow illness sojourners and the sharing of new treatments, research, articles, new protocols, Doctor information…. It goes on and on. I have actually presented info to my own doctors that other Lymies have shared that they have used to help treat! This is actually how treatment and information regarding chronic Lyme is growing and moving forward; it is the power of the online community. Really! I have even had a doctor tell me that it’s the bloggers who are moving information forward with chronic Lyme.

Thanks to Facebook I have also made some dear fellow-Lyme, fellow-Christian friends. Dear sweet people some of whom I have even spoken on the phone with and prayed with. I have to say some of the dearest Christian women I have met are those that not only love Jesus but have suffered so much and continue to suffer. The difference is that they let their brokenness have its perfect result in self-refinement, stronger empathy, greater love and letting themselves be used for His purpose. 

So thank you Facebook; (ignoring all the hate and the arguing, the negativity and the stupidity, the vicious attacks and naive hatred…. )Thank you for letting us connect, for letting us share and be real, for being a platform for the chronically ill, for letting us see life happening all around us, for letting us support each other and lift each other up in times of crisis, and thank you for no end to funny cat videos 😸

And thank you to the people who use Facebook for good and not evil.

Sticks & Stones May Break My Bones, But Words Can Crush My Soul

“”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. 

Etc, etc. 

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

 So you know someone with Lyme?