Don’t Miss Out On The Collateral Beauty 

I just watched a movie called Collateral Beauty; (you probably saw the trailer at Christmas time), a tale of a broken man and a call back to life from unexpected sources. Well not what I would call a great or life-changing film, I would say it was a good one, and it had some good life lessons that were given to us by “death”, “time”, and “love”.
One line in the film spoken by “love” to a hurting man who lost his child was “yes I was there in her smile, there in her laughter, there inside you in the happiness…..But what you need to know is that I am here also in your pain. I am in everything and the reason for everything. ”
I found this incredibly profound and in a sense very true; but instead of simple love as the world would understand it, I replace that with the person of Jesus Christ; Who in himself is the embodiment of love. “For God so loved the world that he gave his only son….”

He is the reason. He is the purpose. He is as relevant in our joy as He is in our suffering. He catches every tear and often we feel Him more closely in pain than in joy. 
In the blindness of our own humanity so often we fail to see Him working underneath the surface, but He is, even (especially) in our misery.

For He said He causes all things to work together for the good of those who are called according to his purpose. That is where our faith and our hope lies; nothing, I repeat nothing is wasted when we are in Christ. Quite the opposite. All things are redeemed for his glory and our good.

Sometimes we are lucky (blessed) enough to catch glimpses of Him working miraculously in the most difficult and tragic circumstances. When we get these glimpses of his hand at work sometimes we call it a miracle. But may I propose that this is the normal and not the extraordinary? Do we need to see with our eyes, or do we need to know what God is up to in order to believe that He is always, always working underneath the surface of all things at all times? For his ways are higher than our ways, his thoughts are higher than our thoughts. And in his omniscience He weaves webs with a million strands of intricacy with multi-faceted intentionality in every life circumstance. Not because of who we are, but because of Who He is.
So no matter what is happening, whether you see a purpose or not, whether you simply see the circumstance or maybe get a glimpse beneath the surface into the divine….. “just make sure you notice the collateral beauty”. 

The Chronic Illness Sufferer’s Dilemma: To Post Or Not To Post, That Is The Question

Nobody is normal. 
Everyone is unique.

That said,  long term illness changes a person; it changes your mind, your emotions, your perspective, your way of thinking… to say nothing of your body.

And the places in your mind that change can be impossible to perceive what is caused by the physical (hey come on, LITERAL viruses and bacteria in our brains) or the changes that come from long-term isolation, suffering, frustration, loneliness, abandonment, hopelessness…. (trust me even with the deepest introspection lines are blurry).
So when you are in this bubble of misery and feeling desperate; many of us reach that crossroad decision of whether to reach out publicly or not. Now some do so all the time, and some do so seldomly. I want to share with you, the healthy person, the “normal” person, what goes on in our heads and where the need to reach out comes from. Because to you seeing our (sometimes frequent) posts regarding how we are feeling physically and mentally can come off as….

Desperate

Attention-getting

Overly dramatic

Whiny

Ungrateful

Emotionally unstable

Lacking faith

Hypochondriac 

Lacking strength 

Or “_____” fill in the blank 
And honestly maybe some chronic illness sufferers are. BUT, I am asking you to consider grace, and here is why. 

Imagine you are living a fairly normal active life; you work, you socialize with friends a few times a week, maybe you are also busy with kids. You DO stuff! You go out to movies, you eat out at restaurants, you meet friends for coffee, you have a lot of human interaction at work, you sometimes take day trips or mini vacations, your life may not be perfect or exciting, but it is full. 

One day your body starts to betray you. Suddenly all the normal daily things that were no big deal become as hard as lifting heavy boulders. Your entire body is tired, tired to the point it feels like you have lead in your veins. You swear earth’s gravity just dialed it up a notch as you struggle to go up the same staircase you have been bounding up the last five years. 

You start sleeping a LOT more, so much more you start to feel guilt over your laziness. Even after a full night sleep your body starts to shut down in the middle of the day and you need to nap. The thing is all this extra sleep doesn’t help and you are just as tired and fatigued when you wake up in the morning as the night before. Even worse you feel hungover, even without alcohol: toxic, heavy, foggy, headache, basically like sludge.

So of course you pump yourself full of caffeine because you have a life and things to do… only the caffeine is a quick fix that doesn’t last, so you have more. After a few cycles of this you start to blow out your adrenals, and things get worse…. You start to feel like you are letting the people in your life down as you can’t be there for them in the capacity you were only a short while ago.
Oh and did I mention the pain? You are dealing with pain that has no business in your body at your age! You feel old and achy. Joints and tendons, muscles and tissues that you never even “felt” at all before, are making their presence known by infusing non-stop pain. 
Along with all of this (and a myriad of other symptoms I could mention) is the fact that your mind and your thinking are as foggy as your body. You know that feeling when it’s past your bed time and you feel your brain trying to shut down for the night? How everything becomes difficult if you are fighting sleep? Trying to just finish that chapter, watch the last 10 minutes of that movie as your brain wants to sleep….Now it feels like that ALL the time, all hours of the day as your brain is constantly trying to go down as you are trying to get it to go up. Every waking moment is a battle.

Normal conversations become difficult because it feels like you are fighting through fog to both process what you are hearing while trying to formulate the appropriate response. You never knew until now that it actually takes energy to communicate and be with people. You frustrate yourself as word recollection fails you and you feel dumb as you can’t seem to formulate articulate conversation.
As time goes on all this takes a toll and you start saying no to things. The energy it takes even to get ready, drive places, prepare for things… becomes too much, and you start having to pick and choose what you are able to do in a day, or even in a week or month as things get worse.

You start realizing that every activity also requires recovery time, and one afternoon out may mean you need two days in bed afterward.

Your world grows smaller.

As time goes on mentally and emotionally you for through all kinds of cycles that can be up and down and all around. These can swing extremely even over the course of one day from crying to anger to apathy. 
At first all the people in your life are supportive, but as time goes on and you don’t get better, and you have seen this specialist, and that specialist and tried every suggestion of every caring friend from acupuncture, to massage, to “this amazing doctor that helped my friend who had the same problem!”

… you have read every article ever sent to you on any condition that even sounds similar, you have done crazy alternative things you would never have thought you would ever try…. your friends start to drop away, they check in on you less and less, they stop inviting you to things because they know you will just say “no”. 

Life moves on without you and as the years go by your world gets smaller and smaller and smaller until you find you are alone most of the time.

You probably at this point have little to no money because it’s been spent trying to figure out what’s wrong with you and/or trying to get better. You also probably either can only work very little or not at all, and if you can work it drains you so much you have nothing left for any semblance of a life.  
Remember when I mentioned the muddled place of your mind and your emotions caused by both the physical and psychological? This is where you are now. You feel a little “crazy” and desperate and sad and lonely. Since you don’t see people in person so much anymore you reach out to your friends online; both your real-world friends and your friends who you have now met in your chronic illness forums and such.
So I am speaking to you; “normal” person, who I love and admire. When you see this chronically ill person prolifically posting, “wanting attention”, talking about what they are going through very publicly (sometimes) going into TMI territory…. know that this did not happen overnight. This is the same person you know and love and they are beyond desperate to be the person they once were. 
They post because:
They want fellowship,

They want friendship, 

They want to both hear and be heard,

They need a sounding block,

They want to feel normal,

They don’t want to disappear and be forgotten

They want to have a glimpse of normalcy and online may be all they have

They don’t see people much face-to-face so “face”-book is their life.
Hear me now as I write this for my sick brothers and sisters!

Everyone needs people! When you are sick and isolated online is your people!

We are not grand-standers or attention getters (at least not most of us) we are people just like you who have had our lives changed and shaped by our illness and our circumstances. All we want is to be normal and healthy. We covet the little things that most people take for granted; even just taking a walk on a sunny day. 
One more thing I want you to know; worry about the chronically ill people who don’t post and instead stay quiet. They are experiencing everything the communicators are, they are just internalizing their pain versus reaching out.  

It is: Having an outlet, versus internalizing everything

Isolation, versus reaching out

Honesty, versus putting on a happy face

I have seen too many of the “quiet one’s” obituaries online, (self inflicted.)
Please also know the  anxiety we go through on what to post and what not to post. 

It is SO hard to judge because (especially) on a bad day our perspectives are askew… and the reactions we get from people also vary greatly.:

You get the positive feedback from the chronic illness community;

 “thank you so much for sharing, I am not alone”.

  “so glad to hear another person’s perspective”.

“Thank you for being honest and blazing a trail for others that will come behind you.”

This community supports you and your difficulties as you support them. And this is a safe and honest place to be raw and real in your times of suffering. 

But, you also get the negative reactions of people who think you’re a drama queen, or are sick of hearing about your pain, or… (see list at beginning of post). So you get the negative feedback, or the stony silence of family members, or the snubs and shuns of people who used to support you….
In closing; why am I posting this? I will tell you it’s not for attention or sympathy. I am giving voice to the silent suffering ones. I am advocating for those whose families don’t believe them. I am opening a window into a world (I hope and pray) you will never experience so that you can have a better understanding of your sick friend or family member.

This seems like a good day to do this, Christmas Eve when hearts should be open, love should abound, peace and charity reign over all else 💚

For Your Consideration… What to say when you are put down for “being your illness”

So I have been experiencing a lot of activity on one of my latest blog posts and I have also been reposting some others that are relevant to the struggle.

I have been getting saturated with great comments on those so grateful that someone is voicing their experience and giving credence to their experiences to their friends and family.

That said of course I get negativity once and a while (as we all do); but what really hurts is when it comes from someone within the chronic illness community. 

I see it too often (mostly on the Facebook feeds of others) attacking because someone’s experience is different than their’s, or they think the person is too vocal, or whatever….

Why do we do this? Why do we hurt each other? Why are we so narcissistic that we seem to think how we think or feel or our experiences has to universal and be exactly what everyone else’s experiences should be that has difficulty and is sick? Apparently this is a mindset that allows for zero tolerance or understanding that diseases manifest differently in different people and affect our minds, bodies and chemistry differently. Wow, what a concept!
So I offer up to you the following comment left on one of my posts (that was written to try and raise awareness and understanding),  and my re-buttal to this comment. I also want to ask you; the chronic illness community to join the conversation and share your experiences. I will ask that there be no attacks, swearing, name calling or ugliness, rather let us use this as an opportunity and platform to further raise awareness and keep the conversation and testimonies going.

Here we go..

Negative Blog Commentor:

“I have what is considered an invisible illness (a pretty freaky one), and honestly, at the end of the day, I can choose to live a normal, productive life. Are there challenges? Sure. But we all face challenges. ALL of us. Some are physical. Some are emotional. Some are psychological, financial, relational, career-centered, social… you name it. 
I’m uncertain as to why so many sufferers from invisible or even visible illnesses choose to be victims daily. It’s a choice to keep life in perspective, to keep moving, and to realize we’re not special because we suffer. Who doesn’t suffer? Did you know that the average person in the western world has, on average, 5 things going on with their body that could be/are serious? Illness doesn’t excuse us from life, so live it fully. 
Maybe you’re not datable because you insist on BEING your illness, 24/7. Is it all you talk about? Post about? Think about? Is there nothing more of you than your illness? Who wants to date someone who finds their identity in being sick? Do you bring your illness up every time you meet someone? Talk on the phone? Go anywhere? If you know to converse about nothing else, then you’ll stay single. 
Stop being your illness. It doesn’t make you special. It makes you common. Be the best parts of YOU… because you are not your Lyme, fibromyalgia, diabetes, epilepsy, MS, lupus, or any other invisible condition. You are YOU. Offer YOU. Potential mates don’t want to hear about nothing but your illness any more than you want to hear about all their exes, money issues, terrible living arrangements, bad pizza, or abysmal grades if you’re in school. Be you… stop being a victim.”
My rebuttal: 

“(Person’s name), I had to pause, think, stop and pray before responding because my immediate (fleshly) reaction was anger; anger that you have projected your own experience onto others without understanding that even though we all suffer chronic illness, the nuances, experiences, manifestations, brain chemistries, how we are individually effected, where the diseases have most effected us, our life paradigms, backgrounds… and SO much more differ radically! I cannot say this with enough emphasis. 
So first I want to praise you for your outlook and that you are “not your disease” (none of us truly are) and that you have the ability and will to live and thrive by fighting through. Not everyone is you. 
May I offer up to you for consideration that most of us want that very same thing. Who “chooses” to be a victim? Far fewer than you obviously think.

Maybe (just for the sake of argument) a very small minority that already have psychological issues or have an abusive background or “—–” might in fact use illness to further that inner victim mentally and to feed that need to get attention.

BUT! Most of those I have come across (by a landslide majority) who are suffering from chronic illness that has re-shaped their lives and the very essence of who they are… are desperate to be normal, to simply live and not be encumbered and isolated and in pain, fatigued beyond functionality….and missing out on life. 
I also want to let you know that having been chronically ill now for decades, and having experienced all the facets and manifestations (highs, lows and everything in between) I KNOW what it is like to be so physically and mentally (by this I don’t just mean mindset, but literal bacteria that has crossed the blood brain barrier affecting my mind in ways I had ZERO control of) sick that I was incapable of just “being me” or even having access to parts of my own mind or personality. 

I do understand that if you have not experienced this kind of illness you will have no comprehension, and I am honestly glad that you haven’t.

Consider yourself lucky, blessed, fortunate… there are many who are not.
I also want to add that no, in fact for the most part in my personal life I do not go around talking about my illness all the time. It is not the first thing I mention when I meet new people, it is almost never talked about among my coworkers, even with my closest friends we focus on other things, because I wouldn’t want to hear it all the time, why would they?

Again I also want to add that like I mentioned before my health goes up and down, I have about 2/3 of the year accumulatively that I am really struggling, and it’s in those times that I tend to write more about said struggle. But, I have good months where I feel much better and… guess what? I use it to my full advantage snd be as active as I can and as social as I can and LIVE and be me. I jump at the opportunity when my brain and body allow. And I am not alone. In fact it is pretty common for chronically ill people to overdue and set themselves back when they are feeling better because this is what they do desperately want. Because they know they are “not their disease”. 
So instead of judging others harshly, accusing, condemning, bad-mouthing and making great big assumptions that EVERYONE is exactly like you and your experience with a chronic illness, (because after all according to you everyone has a clear head, full access to their faculties, and an iron will to overcome anything and can’t possibly be so sick that they can’t just get out there and live) and should just pick up their bootstraps and “not be their illness”. 

Maybe do some reading and research, especially on neurological effects of Lyme and other illnesses that can cross the blood-brain barrier and/or mess with your hormones and other functionalities that make you “you” so that you can have a small piece of empathy for those that are less fortunate than you and desperately want to thrive instead of just exist.
*also I might add that I blog not to whine or “be my illness” but because I have deep empathy for the suffering and wish to give a voice and some comfort to those that have none. ”

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. 

❤️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?