No One Talks About the Fear

The other day was a stunningly beautiful sunny day with a light breeze.  Exactly what you imagine when you think of the perfect day to be outside doing, well, anything.  I, however, sat looking out the window from my physical therapists office.  You know, like you do.  My physical therapist noticed me looking and said, “What a beautiful day.  Doesn’t it make you want to go for a walk?  You know, that is something you can do and it’s very good for your overall health.”  I produced my best fake smile and mumbled the appropriate agreement, but it really ruffled my feathers and I couldn’t figure out why.  People make these comments all.the.time.  Why was this one nagging at me?  Turns out, this was a good question.

Who wouldn’t want to take a walk?

Healthy people don’t understand that chronic illness and pain is not linear.  This means that the consequences don’t always match the actions.  In fact, they usually don’t.  Why is this important?  Because the human psyche functions off patterns and from patterns it gains predictability.  Predictability makes the world go round.  Of course I would love to go for a walk on a beautiful day.  For a normal person who starts a walking regimen they start with a short distance for a week or two and then over time they can walk further and further.  Their progress is basically linear, predictable.  My body, however, is completely unpredictable.  Maybe today I could go for a walk down the block.  Maybe I could do it tomorrow and the next day too, but the following day I might not be able to get out of bed at all.  Did I do too much?  Should I have only walked every other day? Would it have mattered?  Suppose this flare lasts for three days and on the fourth I actually feel really good, should I brave a walk?  Or am I asking for trouble?  The human mind thrashes against this lack of ability to even vaguely predict the outcomes of our actions.  Given a total lack of knowledge about the consequences how do you make these decisions?  Think on that for a second.  This is how someone in chronic pain lives.

Which way do I go?

This is what a map looks like in the world of chronic illness and pain.

The greatest emotion that this inability to predict our own outcomes produces is fear.  No one ever talks about the fear.  If there was some ceremony where we were all sworn to secrecy on this matter, I clearly slept through it.  When I’m faced with a beautiful day and I’m contemplating a walk my head is calculating it’s very own spreadsheet of costs versus benefits.  Will enjoying fifteen minutes of walking in the sun mean I’m down for the next day? Three days? Five days? Week? How high is my pain now?  Will this help or hinder? How high is my stress? Will this help or hinder? How is my mood?  How is my fatigue? Will this help or hinder? What do I need to do over the next few days? Will I be able to do it?  Where am I in medication doses? Will they last the walk? Will I need more after? Finally is it all worth it?  Now if you look back at all those questions, there isn’t a single one I can answer definitively.  At best I can guess and more often than not, I’m very, very wrong. “Don’t you want to go for a walk on a nice sunny day?” seems like a very simple question, but to someone suffering from chronic illness and pain, we left simple behind a long time ago.

My brain at every single turn.

My brain at every single turn.

While I may have made it clear that the simple is actually quite complicated for those who suffer chronic illness and pain, I think we still have a bad rep for being flaky, cranky, unpredictable, angry, sad and many other things “with no good reason.”  I don’t deny that our moods are all over the board, it’s the last bit that is, well, absolutely wrong.  Too strong?  Give me a chance to explain.  When a prisoner of war is taken and they want information these days they use a lot of psychological torture techniques in order to break his mind.  The very first thing they do is disorient and imbalance.  In order to do this they tend to keep prisoners in cells below ground, they turn on and off the lights randomly.  They allow no clocks, no calendars and often use loud music or noise to assure that sleep is disrupted.  This disrupts the prisoner’s natural algorithms for being awake or asleep, it confuses him as to whether it is day or night, and he loses his sense of time.  This is a means of wearing him down.  The next step is creating imbalance, which is created by a lack of predictability.  For instance, perhaps one day someone will speak to the prisoner and he responds.  After this session the response is all smiles for answering questions, pats on the back, special treatment, and special food.  The next day the same person arrives and asks similar questions.  The prisoner enjoyed all the positive reinforcement the day before and again he responds.  Only this time, to his total surprise, he is yelled at, told he is not worthy of speaking in this man’s presence, he is beaten, and he is not fed that day.  Come the third day the same man appears and asks questions, the prisoner does not answer because he now knows he is not supposed to speak.  This time the response is the same as the second day, he is verbally and physically abused and they continue to starve him.  The fourth day comes, the man appears, the questions start and the prisoner has no idea what to do.  How can he answer questions without speaking?  This continues day after day, but try as he might the prisoner can’t figure out the answer.  Sometimes he is rewarded, sometimes he is punished for speaking.  Every now and then he is rewarded for his silence.  He is terrified, exhausted, and confused.  These are just a few torture techniques used to psychologically break a prisoner.  Let me repeat that in case you missed it: These are torture techniques used to psychologically break a human mind.

Psychological torture, loss of control and sensory input.

Psychological torture, loss of control and sensory input.

What does that have to do with the chronically ill and in pain? Everything. To start most of us do not sleep regular sleep cycles (or at all), our body is already confused as to whether it is day or night and our mind is not attuned to time of day or month or season.  This is part of the illness and pain blocking other signals and brain fog.  However, the more important parallel you see here is we spend all of our lives imbalanced.  We have no idea if what we choose to do now will mean that we can’t move tomorrow or that we will just get to enjoy ourselves.  We are that prisoner not knowing that if we go through with it whether we will get sunshine and rainbows or the rack (the torture device not a clearance sale at Nordstroms).  What kind of choices would you make if you knew that going to see that movie may cost you a broken arm?  Going to that party may mean a broken leg?  That weekend getaway would probably mean a few slipped discs?  Or maybe you will get away with it…this time.

Well, at least it was a good movie.

Well, at least it was a good movie.

Is it any wonder our moods vary from one minute to the next?  We are scared, exhausted, depressed, anxious, lost, disheartened, and so much more.  We have no control.  We know what we want and it is in sight, but completely out of reach.  We are all desperate to get better and would gladly run marathons, backward, barefoot, naked, covered in whipped cream, carrying a monkey who was playing an organ grinder and wearing a fez if that were the path to health, but it isn’t.  For us, of moving at all, often means moving backwards.  It’s hard to fight something you can’t see or even predict.  It’s even harder when your mind is struggling under all the weight. And nearly impossible when everyone around you assumes that your illness can’t possibly be THAT bad.  Well, they are right. It’s much worse.

We try very hard to remember what life was like when we were healthy, please take a moment to try to imagine life with chronic illness and pain.

We try very hard to remember what life was like when we were healthy, please take a moment to try to imagine life with chronic illness and pain.

About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in anxiety, chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, conditions and diseases, confused, coping, depression, fibromyalgia, health, helping and tagged , , , , , , . Bookmark the permalink.

82 Responses to No One Talks About the Fear

  1. Janet Logan says:

    Truly an excellent analogy. Thank you.

  2. Laurie Norman says:

    This is so good. I rarely post about my fibro on Facebook but I shared this. You verbalized what I can’t. Thank you.

  3. Billie says:

    Another excellent episode in your story. It was a long time since the last one and I’m glad you’re back to work on it.

  4. Reblogged this on the best liar you know and commented:

    This is a wonderfully written piece about the unpredictable nature of chronic illnesses and chronic pain; it provides an elegant theory for chronic pain suffers’ actions and moods- one that I know I have experienced, but could never have articulated so well.

    • leitis23 says:

      Wow, thank you. What a wonderful compliment. It’s wonderful to know that even though I feel so down and out that my writing reaches others and hopefully in some small way…helps. That means the world.

  5. Kay says:

    This is without a doubt the best explanation of our situation!!!!!!! How I wish the unaffected would read it. Not many healthy people are interested so it we who are ill are mostly the only ones.
    Thank you so much for this great piece of informative info ‘

    • leitis23 says:

      Thank you so much. That is such a huge compliment and I’m very flattered. I do think that some of those that are sick do take some of these articles to their loved ones. If just one of those healthy people gain some insight into what their chronic illness sufferer is fighting daily then I feel like I’ve done something amazing. It’s the reason I brave putting such personal information out for the world to see. Maybe someone will relate, feel less alone, and maybe someone who knows them will understand just a tiny bit better. It’s the best we can hope for. Am I right?

  6. Great post! Well written and well said. I’ll be following 🙂

    • leitis23 says:

      Thank you for reading and for following, what a compliment! I’m very flattered. I’m going through a rough patch, if that wasn’t obvious and all the hits, comments, shares, and follows are really making a reciprocal difference in my world. Thank YOU.

  7. I’m on FB and followed a post to your site. As a physician and pain advocate, I find it necessary to apologize for the failures in your medical care. As well as all others who are suffering alone in prisons with this invisible miserable illness.

    There is HOPE and HELP!

    But you will not find it where your are looking which is mostly in the Conventional Medical CM world. CM has lost it’s way by playing games with the science, the methods that scientist use, all of the evidence, twisting the definitions of words, hiding what many physicians have discovered in past generations, hiding or distorting known treatment options, watering down those known treatment options, colluding with each other to keep these known facts hidden and confusing everyone on how nature and the human body works.

    The most egregious of these is twisting the concept of pain. Pain is not a static feeling, it is an invisible dynamic energy force that is individual and personal. Try proving to someone you have an itch on your back! You can not! The person who you get to scratch your itch has to believe you implicitly, trust you implicitly, follow your instructions without questioning your need, keep scratching until you tell them that the itch is gone. Have you ever scratched someone’s back and you think that your have found the spot, but they tell you, no, that is not it. or move over a little or scratch harder or for a little longer.

    Long-term pain is exactly like an itch.

    You can not see an itch in the blood or on an X-ray.
    You will not be able to take a pill to suppress or remove the itch because that is not how to remove an itch or how nature works. You will not be able to prove you have an itch in a court of law!

    So when a physician tells you that they can “see” your itch on an X-ray. Don’t believe them!!
    They do see something on the X-ray, but that is not your pain! They can remove the “thing” they “see” on the x-ray and they will do a good job. But they can NOT solve your itch problem in this manner!!

    This is the modern day global medical error, it makes no common sense, not grounded in reality, illogical, unscientific, unreasonable, impractical, arrogant, ignorant and stubborn.

    So where is the most common place that itches with pain? Logic, reason and common sense places it in muscles. Muscles are the only organ system that requires your and I to scratch it as maintenance for it’s wellbeing. The muscle system is the most common place for long-term pain. Ask you back muscles after doing hours of gardening, or leg muscles after playing extra sets of tennis or your butt muscles after a slip and fall.

    The other organ system do not whine! The skeleton, joints, disc, menisci, the vertebral column, cartilage, the brain, nerves as well as all of the other body parts and organs are mostly self contained.

    The only way to find your itch is with touch. Someone has to touch your with the intent to find your itch and scratch the itch with your instructions until you tell them that your itch is completely gone. So hands-on therapies, massage spinal adjustments are your treatments of choice.

    This final part is a hidden truth that has been easy to hide. The ancient Chinese were the first human beings to document the discovered that if you apply hard constant pressure into a stressed and painful muscle you can activate healing.

    They also discovered the most profound tool in the universe, the thin needle!! These thin needles can reach inside of the painful muscles to scratch the itch and activate healing.

    The simple, safe and best ways to tend to your itchy parts is with your fingers, hands, balls, bars, Theracanes, Acupuncture, dry needling, GunnIMS, Hackett/Rachlin/Baldry or Travell Trigger Point injections.

    This part is vital. If no one has attempted to scratch your itch, it will seed and grown roots deeper into the muscle fibers. In these advanced cases, touch and hands-on will not reach. The thin needles is the perfect and only tool that can precisely seek out and destroy your itch without doing any additional harm to you or to the surrounding tissues. [sorry for being so long winded]

    • Kay says:

      Thank you Stephen, all the positive info is such a blessing and helps!

      • Gee the FEAR will exponentially multiply your pain and misery. Once you know where your pain is located, what to do about your pain, that you will not die from the long-term pain, that you have some control, that it is not your fault, that you have been lied to and that you are safe the fear will eventually leave. The grieving process will then run it’s course and then you will find peace. You are the truth and perfect

    • Ruth Blanka says:

      If insurers would get their stuff together to cover more of these treatments for the length of time they actually require, I think many of us would be only too happy to give them a fair shot. If there is coverage at all it is for 2 visits a week for 3 weeks or something similar. After years of pain that’s just not going to cut it. As always, follow the money – this time to insurance carriers as part of health care for profit.

    • kait says:

      I agree with you on several of ur points, and its refreshing to hear someone in the medical field admit that we are in fact, often lied to for the sake of monetary gain and business. However…I have complex regional pain syndrome as well as arthritis, sciatica, slipped discs, spinal stenosis, degenerative disc disease and the list continues. Those small thin needles to me may as well be a butcher knife. A massage for me is torture and not st all beneficial, and while my muscles are definitely afflicted, my nerves are where the problem lies. Its no secret mindset plays a huge role in pain, but what is trying to be conveyed in this article is that having chronic debilitating pain wreaks havoc on ur mind, snd therefore a “normal, healthy” mindset is impossible. The fear will always exist. Another remark that I hope to draw your attention to is where u say once you realize it wont kill you, you’ll be able to move on…. I’ve lived with my condition for 9 years, starting at age 22 and prior to that suffered with migraines, cluster headaches and gi problems. My first memory in life is drinking barium while I cried to get xrays done. Chronic pain sufferers are nine times more likely to commit suicide on average. The reason for this is because there are worse things in life than death. When I have a flare up, therapists tried to use bio feedback snd imagery/meditation to quiet ny mind and give me peace. Do u know what my “happy place” was? It wasn’t thinking that one day I would be cured. The most peaceful thought was dying. To perhaps take so many painkillers that I for once drifted into a sleep that I would never come out of. Death is a comfort to me, and I only continue to live to spare my loved ones the agony and guilt I know they’d feel if I were to take my own life. Teaching people that there is ONE answer to ANY problem is dangerous, to put an entire group of people into thr same category snd say THIS is how u overcome ur ailment is dangerous and furthermore it teaches the general public that we have control over our pain or are ignoring the one treatment that would work for us. This causes people to see us as over reacting, exaggerating, lying, being lazy or wanting attention. While I appreciate a lot of what you said, and the itch analogy I thought was very good, and I believe ur correct in stating that the invasive and sometimes toxic methods of treatment are the most useless…i would like you to understand that when ur insistent that there is one answer to such a wide variety of ailments, you are actually shifting the blame back to the victim of the disease. It reinforces the idea that if this treatment fails us, its US thats the problem. It causes the patient to feel guilty. However, being that my particular ailments are not primarily related to my muscles, maybe I just know that accupuncture, massage, chiropractics, etc will not work for me, but would be excellent choices for those suffering from muscle related ailments. Either way, thank you for being one of the few in the medical industry that educates yourself, is obviously truly concerned with the well being of your patients and not just your wallet and is willing to admit the huge flaws in our “modern” medical treatments. If only all doctors would take such a personal interest in their patients as you clearly do!!

  8. Moira says:

    Brilliant. Thank you. Moira

  9. Maureen Roberts says:

    Wow, such a brilliant piece…… and should be shared far and wide!

  10. Thank you. Honestly this explains how it is. It is so hard to verbalize to people how it works and this is a big part of it. Thank you so much. I will be praying……

    • leitis23 says:

      Thank you for reading and the kind thoughts. It is very hard to explain our lives to people in a way they understand. Hopefully this is something they can relate to, sort of. All the best.

  11. aredtigress says:

    Crying so hard right now! You head the nail on the head, this month has been awful and I couldn’t find a way to explain my craziness to the hubs. Last night he said the dreaded, “If you start slow and build up…”. I lost my temper – not that that helps any. Thanks for the post, going to share it!

    • leitis23 says:

      I am incredibly touched that my writing meant that much. I know how hard it is when people just don’t understand and really, that is most of the time. It is especially hard when this is the case with the people closest to us. I hope that you had the hubs read the article and it fostered an honest discussion. It’s a rough situation all around. I know that our moods can be very hard to control, I’m all over the board at the slightest things. Mostly I keep my mouth shut and remove myself from the situation until I’m removed enough not to be emotional. Unfortunately sometimes that takes hours, sometimes weeks, but it is much better than what can come out of my mouth. I don’t have much in the way of answers, we all have to learn the tricks that work for us. However, I do suggest you always educate yourself and others as best you can, knowledge is your best tool. If nothing else, you can keep reading here and know you are not alone.

  12. Carla says:

    You are truly a godsend! Thank you, thank you, thank you for identifying my feelings to a “T”. I sat and sobbed tears of gratefulness for your honest and eloquent writing. Chronic pain robs us of our true self and loved ones really don’t get it. The fear and sense of loss is overwhelming.

    • leitis23 says:

      Thank YOU for reading and commenting. I’m having a hard time and all of this feedback and support has actually lightened my load a bit. I’m really grateful that my writing is doing some good in the world, even if I physically can’t. I also did a post about the loss we experience due to chronic illness, its called “lost in grief” you should check it out. Thanks again, without readers, and especially commenters, my writing would be yet another exercise in futility.

  13. Silent Wolf says:

    I have a rare autoimmune disorder called Behcets Disease along with arthritis in my back and several joints. My mother keeps telling me to get out and walk more, that if I do a little more each time I can build up. This from a woman with fibromyalgia! All I can do is nod and feel like I can’t do anything. I’ve gained 80lbs over the past 6yrs because I have trouble moving and some of my meds. I try to get out of the house a couple times a week but I live in an upstairs apartment and stairs are hard. I walk around our local grocery store but when I do major shopping at the bigger store, I must use a motor cart. Because of my age and my size, I am subjected to dirty looks, whispers and even foul comments about getting my fat ass up and walking. When the pain doesn’t get me, it’s my intolerance to heat. Nobody seems to understand that constant overheating saps whatever energy you might’ve had!

    • leitis23 says:

      I’m sorry to hear about your situation. I suspect that social perception is almost harder to deal with than whatever illness we fight. People make assumptions, they are thoughtless and so very often they are cruel. Maybe they know it, maybe they don’t. Who knows. I’ve dealt with the same, not just from the public, but from doctors, they take one look at me and say that I don’t look sick. What exactly does sick look like? I’d like to know, so I can do a better job. There is no straight line for us, we can’t just build up, and it’s really hard to go out and do something knowing you are going to suffer, even when it’s something you really want to do like going out with friends! So walking is a really tough proposition. Perfectly healthy people have a hard time walking every day and they suffer no bad side effects. So why do we get funny looks? The reality is that some people just aren’t going to understand, so perfect that fake smile and nod and in your mind have whatever internal conversation with them you want. Including whatever expletives make you feel better. You are the only one that knows what it is like to live in your body so you make the decisions right for you and seek support from those that actually have your back. Thanks for reading and sharing your story.

  14. Natalie says:

    This is just excellent. Thank you for putting all of this into words. I am subscribing to your blog.

  15. This was an excellent article!
    They are studying this to try to help us make it more predictable. It is only for certain patients but they have found when you have a certain set of symptoms, they call it PEM. Post Exertional Malaise. If you only exercise to a certain heart rate or for a certain amount of time, you should not pass the tipping point that leads to a crash. This doesn’t work for everyone though. You can find more information here:

    Maybe we should get a smartwatch that keeps our heart rate while we do any physical activity and try to keep our heart rate lower to see if we can do more without crashing for days. But there are a lot of other factors. I know if the weather is good and the barometric pressure is rising, I can do more than if the pressure is dropping. If I have any sort of infection at all even the tiniest non-important thing like a cut on my foot, I will crash sooner than if I do not. If I don’t eat every 3 hours and drink some water about every half hour, I will go into a crash. Certain times of the month are harder than others like when my progesterone levels are higher (the luteal phase). So there are a lot of variables to calculate. These are signs of mitochondrial issues by the way.

    • leitis23 says:

      Thank you for reading and commenting and also the excellent information. I will be reading up on this. If they are right there could be a way of controlled incremental improvement, but as you already stated the variables involved in managing to do this are incredibly complicated and no doubt very easy to screw up. It is a ray of hope, but it is also another example how many calculations a chronically ill person must do in order to accomplish the simplest of tasks. It is a very hard path to walk and I love that they are making headway in research in how to navigate it, but I also believe it is really important that healthy people understand the trials and tribulations of the chronically ill.

  16. I am so moved by this eloquent piece. As I drove 4 hours to an 8 hour class, and back (in two days), and my belly was hurting because sitting for so long makes something in my back hurt that causes my belly to spasm, and now being faced with 2 weeks of studying for my final, I wondered if anyone understood the price I pay? Clearly you do. Thank you so much.

    • leitis23 says:

      Thank you. It means so much to me that my writing touched you. You are absolutely not alone. Many people understand your struggles, I am definitely one of them. I’m impressed that you can do all that. Kudos to you for keeping on with your studies. I wish you the best in your final. Thank you for reading and especially for commenting. It means a lot to me.

  17. Andrew Martin says:

    Most of what you have written is so true in my life. It is a brilliant piece to read and pass on to those that need to understand more of what our lives are about. I have gone from a very active person to one who can only do the boring things and a little at a time. Totally changed my life because of working very hard for a long time to have two back operations but only a band aid on a major problem. Still, life is what you make of it and I am positive most days and just get on with it. But thank you for the piece.

    • leitis23 says:

      Than you for reading. I’m glad they resonated, you and I both went from active to, well, not. It’s better to stay positive but sometimes it can be hard. Have you read the post titled, “lost in grief ” it’s a good one for working things through.

      • Hamstrman says:

        Does chronic mental illness count? I fear if I showed my dad this article, he would say, “Well physical pain is different than… what you’re going through.” I fear people reading my comment here would agree that I don’t “get it” because my pain is “only in my head.” I don’t have bouts of depression, it’s never-ending misery every day no matter what is going on in my life. I don’t remember a time when I felt “happy”. I don’t think I could recognize happiness if it punched me in the face, or appreciate it. I told my parents I wanted to die when I was 10 and it’s been 20 years of therapy and medication and none of it does anything.

        Your story about being told repeatedly to “go for a walk” because it’s so beautiful out and it will make you feel better and, after all, what harm could it do? Or that it’s pretty easy to just put shoes on and leave the apartment. This happens to me constantly. “If you stay inside, you’ll never get better!” “It doesn’t hurt to try.” and my personal favorite, “You’re doing it to yourself! You’re making a conscious choice to stay this way.”

        I’m out of energy and people just keep telling me that if I don’t keep trying everything imaginable, then I’m giving up. There is no “can’t”, there’s “won’t.” And each time I try and fail, it drains a little bit more of the little energy I conserve when I do nothing. It’s an ebb and a flow, starting with people not understanding the gravity of the situation; like you said, when everyone says “It can’t possibly be THAT bad.” Then, over time, they DO get it (or they say they do). A while longer and they’re fed up with your lack of improvement. “How long is this going to go on for?”

        I lost all of my friends because they didn’t know how to be around me. I made them miserable and they couldn’t help me so, because they cared so much, they had to turn away lest they get dragged down with me. Just BEING miserable and people knowing so makes them hurt. I am the definition of a burden.

        So I hope I can be a part of your club. It feels the same…

      • leitis23 says:

        I definitely think it counts and I don’t think anyone here will be anything but supportive. The mind is part of the body and if you had a choice I’m sure you would do what everyone says and get better, but it doesn’t work that way. We don’t get a choice. So don’t let everyone get to you. I know, easier said than done. They just don’t understand. You can tell who wants to understand and help them and who doesn’t and leave them behind. You just have to give the ones that wasn’t too understand a lot of information and there is plenty out there. Plus you aren’t alone, everyone in this kind of situation had a hard time with the people around them. Unless you live it you really don’t get it. Very unfortunately for us.

  18. Vickie Hester says:

    Your posts are amazing. This one and the one What does it mean to live fit so perfectly with how I’ve been feeling but could never find the proper words to express. I’ve been ill for 20+ years. I try to explain to people and come out sounding like a rambling idiot. My husband read these and thought they were absolutely perfect . We have been married 38 years and he knew me pre-illness and has watched me deteriorate over the years. We went from a couple who hiked up to mountain lakes almost every weekend, to hopefully going for short rides in the mountains. Thank you for being my voice.

  19. Heather says:

    I have ankylosing spondylitis and fibromyalgia, and this article expressed very clearly how I’ve felt for more than half my life. People are more inclined to believe the AS diagnosis because they can see the changes on my x-rays that were taken for diagnosis. I’m really lucky for my support network, though; my bestie also has AS and my employers have been awesome. On my bad days where I can’t move I can work from home, they help me when I can’t manage to move paper or other things or can’t do longer errands, and they’re even installing a handrail so I can get up a high step into the office when the company is small enough to not be obliged to adapt the office under DDA requirements. My family doesn’t understand – they can’t. They’re really healthy. But if they have an opinion they keep it to themselves, and that’s okay.

  20. Priscilla says:

    Your article explains in a wonderfully clear way exactly what it feels like to live with fibromyalgia. I know there are many great articles that explain how we feel physically, but I don’t think I have ever seen one that explains our fear of not knowing from day to day how we will feel and having to weigh the consequences of everything we do. Thank you for this! I am definitely sharing.

  21. michelle says:

    This is so true. No one really understands that their is no right choice. That just because last time i could do something doesn’t mean i can this time. Thanks for the article

  22. Haley says:

    This post is very well worded. I appreciate is perspective. I’ve been sick since I was ten years old and am now twenty-seven. I am totally aware of how difficult, depressing and draining it can be to live with something others simply cannot see or begin to understand. I have made the choice to live life to its fullest. Even though it is hard and scary and I know very well that I might pay for my actions. I accept it gracefully and do not allow this horrible pain to stop me. I guess I am lucky in that my friends and family understand that I have some limitations and those that don’t, well, that’s too bad for them. I won’t say there aren’t times that I wish I was “normal” but what is normal anyway. We all have our cross to bear but mine and ours is just a little different and maybe a little heavier. Despite all the horrible things I’ve been through, this condition has made me into a strong, empathetic and grateful person. I am proud to know I’m stronger than this invisible illness 🙂

  23. Suzanne Grabber says:

    Could you be my twin in chronic pain? I did share this on Facebook, but only to my family. I’m so happy that you are able to write and as you imply “put such personal information out there”. It takes an unusual courage to do it. It’s as if you are my twin. I have the same, but unspoken problem. I don’t think I could have found such eloquent words, but I sure experience the feelings.
    Thanks again. Even if my family doesn’t understand my moods and reluctance, at least I could maybe explain it .

  24. Kathy Spiers says:

    Beautifully written. On top of all of that, there is poverty. I almost had my electricity turned off this past week–I thought I knew fear until that happened, but nothing has terrified me more. Thank you for writing this.

    • Ruth Blanka says:

      Yes, the poverty. It is an incredible stressor. I’m doing a little better along that score just now, but truly empathize. They say people are one paycheck (or SSDI check) away from being homeless. Add to that, one med away from the same fate. The horror of the thought of being on the street in this kind of pain and having no meds, home, anything just terrifies me. I have found help through volunteer organizations like Volunteers of America for food and grocery shopping. Look at all your community resources for assistance. There will be redtape, but you may find just what you need. You will be in my thoughts.

      • Kathy Spiers says:

        Yes, I am a retired social worker—I know the system, I’ve helped hundreds of thousands of people. Sadly, in St. Louis, agencies were “out of funds” and at the last minute one of them got a few hundred dollars donated, they paid $100 and I wrote a bad check for $143 then called my bank and sobbed and begged them to overdraw me, explaining I’d have no electricity and explained my ten days of desperate asking for assistance from numerous agencies. I was saved–not by the social service agencies, but by a banker, as he did a lot of work and overdrew that check. I called him back the next day and he nearly cried when I explained that his willingness to overdraw me kept my lights on. Being a “helper” for decades, the hardest thing I do now is ask for help–the one time I did, nearly killed me with embarrassment. I haven’t had the courage just yet to go to a food bank, hopefully, that strength will come soon. Thank you again!!

  25. Kelly says:

    Thankyou. You have given me the words that I have been trying to come up with when I explain to people why I can’t do something even though I look ok. I have CFS/ME but with only a little pain, so my biggest consideration is how it will affect my energy levels. I consider my computations a necessity for continuing to recover when in fact they are based in fear. You are right! Xx

  26. Laurie says:

    I’ve shared this on every fb group I’m in and on Pinterest. This is the best way to explain what we go threw next to the spoon theory! No one talks about the fear. Thank you so much for having the courage to write and share this article. In all the groups I’ve shared it in everyone says the same thing, it’s nice to know your not alone, no one talks about the fear and this has helped them tremendously! May God bless you 🙂

  27. A.L. Mabry says:

    Thank you for sharing this. I was just (literally this week) diagnosed with lupus and fibro. I feel like I am walking around in a fog right now. It’s nice to know others understand.

  28. Laurie Brown says:

    Excellent post! I wish everyone would read this. It’s so hard to make people understand what we go through. This week I am admitting defeat at an attempt to build myself up with physical therapy- I thought I could do it if I started slowly enough. Nope, and least not right now when I’m doing physical work. The exercises they have me doing looks easy and innocent, but it all takes energy that just isn’t there.

  29. Zyp Czyk says:

    You’ve described exactly what I haven’t been able to put my finger on: an uncomfortable and disturbing feeling of impending disaster that haunts me whenever my mind is idle. I try to ignore it, since my attention only amplifies it, but it has been an unwelcome intruder into my thoughts more and more lately.

    Thanks for putting it into words that others can understand.

  30. As a grateful former sufferer of chronic pain and depression, this beautifully written and moving piece captures my time served in hell for reasons I will never understand. So difficult to believe “everything happens for a reason” when your body experiences symptoms that make you crawl and wish you could shut it ALL out. I may never understand my suffering, but it is in he past, and I move forward with overwhelming compassion and empathy for those who remain caught in the clutches of pain and all the agony it brings. It is people this this who are my priority in life; their physical and emotional well-being and whatever I’m on the position to facilitate to restore their pre- chronic pain lives. You are not alone, so tell your pain to step aside and make room for some serious competition.

  31. Michelle says:

    Reblogged this on The Fat Cat Lady and commented:

    This resonates with me deeply. The fear of the unknown is at least as debilitating as the disease itself. Should I? Shouldn’t I? But like the prisoner I find every answer to be the wrong answer and find myself frozen in fear.

  32. Louise L says:

    FANTASTIC!!! Absolutely amazing writing. Please can I copy to give out to practitioners and friends? Xxxx

  33. LisaJD says:

    Brilliantly written piece. On a selfish note, it sometimes seems even harder when you’re trying to work out for your young child what they should or shouldn’t be doing and the potential consequences – and even though she’s a mature 9yo, she doesn’t always see the bigger picture, and my big picture doesn’t always match hers either! This is a helpful piece, thank you for explaining it so well. Good luck x

  34. PWW says:

    What an excellent analogy. I have one family member who seems to live to try and make my life miserable. I am pretty thick skinned when it comes to those who don’t understand, but this is out of hand. My life has no impact on this person’s life at all, and yet, either I hear it to my face or behind my back. To tell them, can result in the nasty comments and not telling them, just spurs the dozens of questions that drive you nuts. So now, I can at least smile inside and think – ‘You know, you’d make one helluva POW torturer’!

    Thanks for such a great article and analogy!

    • leitis23 says:

      Whatever the issue is it’s them not you. Think how miserable they must be to feel the need to target you. Humans. The best you can do is put distance between you.

  35. Sue says:

    Just awesome, I actually cried, not through sadness but it was such a relief to be understood. Particularly laughed at the idea of doing a marathon running backwards naked covered in whipped cream with a monkey. Skip the naked but yes I would!! Thanks for sharing. 😁

  36. Tony says:

    So you have perfectly described my wife and her confusing, confounding, frustrating, illogical and unpredictable situation. Some of our best laid plans result in a day in bed even before they have started. Others are seriously curtailed and very occasionally we pull one off.
    This would be ideal reading for the people about to reassess her for her benefits and blue badge. Apparently if she can walk 20 metres, then she can’t have the latter. On a good day she can walk 100 but with chronic pain that only kicks in later or when she is so drugged up the pain is tolerable. Wish us luck!
    And thank you so much .

  37. Cari says:

    I am totally blown away at your ability to ACCURATELY describe what I call “the paradox of the void” I live in. I have never been able to systematically lay down the ground work for anyone seeking and wanting understanding about what is life in constant pain and sickness. You have it nailed!! I cannot think of one area where you fell short or missed the mark on correctly describing this clear, present and completely debilitating enemy. It seeks to ravage us and then slither away leaving us not quite understanding how to fight this invisible foe.
    YOU SERIOUSLY NEED TO CONSIDER WRITING A BOOK ABOUT LIVING IN CHRONIC ILLNESS AND PAIN. You have it worded so eloquently and are able to communicate precisely the mechanics that are running in tandem to create “the paradox of the void”. This affliction is savage and relentless. Two Thumbs WAY UP my friend!!! You are an inspiration and spur me on to live in victory while acknowledging this beast within.
    I do not fail to bring people willingly or unwillingly into my pain filled life. If you want to know me you MUST truly experience me in whatever emotional, physical or psychological state I am in. I will not take you by surprise. I tell it like it is no matter who you are or where I am.
    My friends know I love Jesus. They also know I hate my pain. They know I want to serve my Lord and God. They also know at times I would do just about anything to make this insanity STOP.
    I also read a couple of your other writings. Suicide… Disability hearing…
    So sorry you had to go through that☹☹
    Thank you for being candid and honest in what you say

    • leitis23 says:

      Wow, that is some seriously high praise. Thank you so much. Honestly, I have started a book the problem is that it is slow going and putting things in a coherent order had proven to be way more of a challenge than I anticipated. My mind can only keep track of a few thoughts at once any more…as I’m sure you understand. Plus my ability to write comes and goes. If you look at the dates of my blog posts sometimes many months pass where I don’t write. Like everyone else I’m subject to the whims of my health. So I’m working on it. It’s just going to take a very very very long time. Paradox of the void, huh, it’s always interesting, everyone has a name for it but yours is a first. Thanks again.

  38. I wish our “medical professionals”, family, friends,etc could read and understand this. I’m pretty positive that most people have no concept of what living with chronic pain really feels like (pun intended). A person may experienced a migraine but he is pretty positive that it will go away after a day or two. Perhaps a lady breaks a bone. She knows that in a few months she’ll be back to normal. They have the assurance that they will be mostly pain free in a short amount of time and can carry on with their lives. We don’t have that assurance. It’s challenging to be hopeful sometimes.

    • Hamstrman says:

      Ugh, it’s the worst. And every medical professional I see thinks they’re the first person to ask me to try. Try anything. And when I’m just DONE trying they act like I’m not putting in effort. In that moment, I’m not, you’re right. The last 20 years I spent trying! What did THAT get me?

      The psychological term is “learned helplessness.” There was an experiment decades ago with dogs in cages (I know, a terrible way to start an anecdote or anything else for that matter). The cages were split in half with a little fence to jump between sides. The doctors would administer a small shock to the dogs. They would all jump to the other side to get free of the shock. The control group was able to escape the shock by moving. The variable group got shocked no matter where they moved to. So the next time they got shocked, they just laid there. They learned to take the shock because trying to get away from it was hopeless.

    • leitis23 says:

      You’re right, one of the hardest things for us is knowing that there is no end. We have no comfort of the time when we get better. This is our life and that’s a dark and terrifying realization. One no-one who isn’t living it can understand. Hope is hard to find and it’s ok to have bad days it’s ok to be sad. We got dealt a bad hand, it’s a fact and anyone going through it suffers mentally. So be kind to yourself, it’s ok to be sad, this sucks, but also look for ways to take your power back, no matter how small. Don’t compare your life with others it will just depress you, trust me. Life is only a race with yourself so look for ways to make you happy.

  39. Suzanne says:

    Awesome! You put into one article what I haven’t been able to articulate to anyone, even my psychologist. Thank you for speaking what I couldnt!

  40. thefirstdark says:

    Reblogged this on ReBirth: The Pursuit of Porsha and commented:

    #THIS #IAmASurvivor #Fibromyalgia #Meningioma

  41. Jacqueline says:

    Thank you for sharing, at least we understand eachother. Let’s hold on to that and stop trying to explain ourselves to the healthy. That only adds up to the frustration.

  42. Thank you for putting into words what we all want to say.

  43. Karey says:

    I actually just printed
    This out to show to my doctors for a better explanation. Nobody
    Besides the chronically ill would every understand this unless it’s them. FEAR it rules everything we do. I’ve been battling crps for almost 20 years and 9 times out of 10 it’s that fear that dictates exactly what I will or will not be doing. Thank you for putting that exact
    Fear into words that make sense.

  44. Karey says:

    Thank you so much for describing the fear that makes all of our decisions. I’ll be using it when descriping what
    I go through every day
    With my crps

  45. Thank you for writing this. I’ve written about this topic many times in relation to CFS/ME and the only person who really truly understands my fears and hesitation about making decisions – the person who helps me make these decisions – is my husband. He has seen what decisions do to me. He knows how things turn out, and he’s right there at every turn. “Do you want to go for a walk? Let’s take the chair just in case.” “Maybe we should stay inside today since you were flaring all last week. It’s ok to do that, babe. We’ll watch a movie instead.” He makes it so much easier than if I had to do this on my own and he is also the first person to tell my medical team, no, she can’t do that.

    Fear – Face everything and rise or Face everything and run? For me, it’s Face Everything and Remember (what might happen).

    Great article. Thank you for sharing! I sent it to my friends and family so they know I’m not the only person who speaks/thinks this way.

    • Joan says:

      What a wonderful Blessing to have a spouse who understands you. Your hubby sounds like a true gem that loves you very much. Many Blessings to you always and in all ways. 😊💜

  46. Pingback: Then everything changed…. from “The Mighty”…. | Entire Family with Lyme Disease

  47. Joan says:

    Thank you. Your shared feelings are truly written from your heart and soul. Feelings that continue to be hidden in my heart as to not be more of a burden to others. Memories of what my life was like before my injury are fading into a desolate fog. Frustration of misunderstood reactions and explanations from my spouse, causes more stresses, fear, when’s the shoe going to drop next mind bending brain fog. That mix, along with pain medication, makes me even more afraid of going for a “simple” walk, especially by myself. What IF I get a block away from home and can’t go further, IF I fall because I didn’t see the small stone on the sidewalk, or IF I turned to look at a flower then fall into a ditch? Before my life changed, I was not afraid of much of anything. I was a firefighter for 25 years! My injury came after firefighting. It came with working with high risk special needs. Something else I miss with all my heart. Thank you again, with sharing what is in so many hearts and thoughts. Many Blessings always and all ways.

  48. Jmart says:

    Thank you for your time and we present realities of how exhausting, physically and mentally, it is to get thru a day while dealing with Chronic pain issues.
    When controlled, chronic pain ia moderated so functional tasks can be attained. At this point in history, many to most people who have chronic pain issues are under-medicated OR not medicated ar all. There are other model which can be utilized and do help certain persons. I’m not saying anything that most of us(CPP) don’t know… everyone reacts differently to different pain managing methods.
    I personally know after 20 years, LTOT is number one on my pain relief list. I also practice meditation and breathing exercises.

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