loveletter

Letter to People without Chronic Pain

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time – I’d still like to hear you talk about yours, too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on … it applies to everything. That’s what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you – people who are not sick. I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.

AUTHOR UNKNOWN
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TIPS FOR DEALING WITH PEOPLE IN PAIN

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.

5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

AUTHOR UNKNOWN

104 thoughts on “Letter to People without Chronic Pain”

  1. I read your post and I was just curious as to whether you have lyme disease…from the way you described your problems it seems as though you could have it. My dad has been suffering from Lyme disease for 8 years and he’s now disabled but I know alot about it so I was just curious.
    Thank You,
    Tracy

    1. Tracy, please go back and re-read this letter. “If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I.” For those of us in chronic pain, Lyme’s Disease is one of the very first things they test for. Trust me, if you suffer from non-specfic chronic pain, you’ve been tested for anything the various doctors you go to have tested for.

      Your suggestion is infact one of the ones that sends me into a a silent rage. I try to contain it and not lash out at the person who is clearly trying to be helpful. It makes me want to scream. If you suggest something very rare, then maybe, just maybe, it might be helpful and not make me want to scream and cry at the same time. I wish to god that a cause for my pain can be identified. If the cause can be pinned down, there is a greater likelyhood that there is a means of treating it that might work.

      I’m trying not to be inflamitory, only to further explain what this author is talking about. What every chronic pain suffer I know also talks about.

      1. In my humble opinion, I think there’s one thing you haven’t tried : Traditional Chinese Medicine (TCM).
        You’ll be surprised, there are MANY health problems that TCM can cure, but which conventional western medicine can’t.

    2. Same here. Was tested for Lyme disease. Stop telling us what to try. Stop telling us to find a better doctor. Unless you going to foot the bill for us to go spend more of our precious Time & energy meeting with a doctor to re-explain our history & leave with go try this doctor.

      Start praying for us!

      Send a card and/or even flowers to someone in pain. You’d be cherished!

  2. Thank you for posting this letter. It is well written, and informative. Even my wife of 25 years found your words insightful, it helped her to understand some things that I go through. I am one who will stand and fight for what I want, or need. I am ready to face off with what ever that may stand in my way. That was until I was stricken down by something that attacks from within, striking joints, and bones randomely, and without warning. You are right when you say no one can understand, unless they have been sticken. I, like many others, carry on a daily battle to appear (normal), or our best impression of what normal may be.I have found the world in general to be ignorant, and they for the most part, do not have the desire to take the time to try to understand. I will show some of them your well written letter, and hope for the best.

    Thank you for taking your time to care.

    1. Yeah, I agree people don’t seem to want to take the time to understand us. Which is discouraging. Personally, when I don’t understand someone, I try to research & learn.

      Praying for our healing!

  3. That perfectly describes a chronic pain sufferer’s life. Thank you for taking of your precious time and energy to share with the world what our lives are like. —– I lived in chronic pain for approx. 18 years with Endometriosis, Fibromyalgia, Restless Leg Syndrome & Chronic Fatigue Syndrome. Then through the miracle of prayer I recovered 85% and have thoroughly enjoyed an almost pain free live for the past 5 years until 2 months ago when I woke up one morning with severe pain in my lower back; the pain went away during the day, but was back the next morning and hasn’t left since. My husband & I went to the ER 5 times in the first 21/2 weeks or so, and everytime they gave me Morphine or something similar to that for pain, and sent me home. As soon as the Morphine wore off, I was back to square one. We’ve been in and out of our GP’s office, my gynecologist (thinking it may be Endometriosis on the kidneys) and finally on Friday I saw my chronic pain specialist. She went through my medical history to search for some kind of clue that might point as in the right direction. She came across a letter from my old GP 10 years ago that said that I had been diagnosed with LPHS, but the Urologist who diagnosed me with it, overthrew his own diagnosis a year later, saying he didn’t think it was that after all. Now my doctor is thinking that it may be that after all. CT scans and ultrasounds show no kidney stones, but I’ve had blood in the urine several times when tested. I see a Urologist again Oct. 7th; hoping and praying for answers from him or even a definitive diagnosis. Any suggestions or ideas would be greatly appreciated. Thank you and God keep you all in His tender care!

  4. i am 19 and have lived so many years of absolute, pure misery. i wish i had found this before, really helps make me feel less alone. it is a shame that there are people everywhere that have not found this much needed support, chronic pain needs more recognition.

    1. I’ve had chronic pain 2 and a half years I feel 4 everyone on here it’s very depressing there’s days I just wanna cry I have a feeling this pain is making me go crazy :/ but ima try and stay stong good luck to the rest of u!!!!

  5. I am grateful for this letter. I’ve not been able to put my thoughts into words as well as this author has. I have posted this to my facebook page and asked those who care about me to read this, and get back to me with any sincere questions or concerns. I hope it helps my friends and family. It sure helped me! Ha! Gentle hugs, Rebeca

    1. Did your friends & family read it? Agree with you. This article explains everything way better then I’ve been able to.

  6. Thank you so much for this letter. I cried when I read it because it is exactly how I feel. The old me is still here, inside this body, wanting to get out. I hate that I can’t do what I use to.

    1. Kelly, I’m crying too. This put words exactly to what I experience. I am trapped in this body too. I hear about people hiking and kayaking. I want to do this again so badly!

      1. I too feel the same way I want so bad for those around me to have some understanding I am a prisoner to my body. I want so to free from this torment, it has been over 25 years I was once the life of the party the fun girl, I daydream of being that girl it was so long ago pray for me.

  7. I was sent this by my husband, who, after living with me for the 6 years following a car accident that left me with bulging discs pressing on the nerves down my entire right side, with chronic pain now really, as much as is possible, “gets it”. That I had just had a baby and was at the happiest time of my life was the most difficult and devastating experience: my now 6 year old son does not understand chronic pain, nor should he have to. In addition to my guilt over this, I am now unable to provide my son with a much wanted sibling. I have never read anything that so accurately descibes something that I si struggle to comprehend myself. The friends and family that I have lost along the way might have benefited from reading this..perhaps it is not too late. Thank you for you eloquence. I sit here in tears.

  8. Joanne no matter what happens this part of your family will always be there for you.
    We are only sorry that we cannot do any more to help you.
    If we could wave a magic wand we would.
    Reading this meant a lot to us as we know how you have suffered for the last six years.
    Now we can relate to this and yourself.
    To an extent we have been through a lot of this with you and will carry on doing this .
    We both love you so much

  9. I could have written this letter….these are my words….this is my life..thank you for expressing it so well in order for me to share it with others…Peace

    1. I agree this is word for word exactly how I feel and think…Thank you for putting into words how we feel you did a great job and hit every point perfectly….

  10. Some interesting info on chronic pain’s somatic origin from New Scientist http://bit.ly/iJlgeH –More evidence that chronic pain patients most likely are reporting symptoms whose signal originates in the brain(vs nerves,spinal cord,bones,or other body based origins). If we can treat the brain and it’s defective programming causing the individuals tp perceive pain that isn’t there,we will have defeated chronic pain. Just think of all those skateboarders/snowboarders/ski racers/boxers who live their life relatively pain free. This is because what a chronic pain patient would perceive as painful they feel as normal everyday aches,strains,and stiffness. Chronic pain patients can access treatment already,such as hynotic suggestion and biofeedback machines, yet this requires too much effort on behalf of a patient with a disease that is caused by low tolerance to exertion,effort,stress,and everyday chores.

    1. Pain is a useful tool, despite being in it all the time due to a spine disease and other illnesses, if I were able to completely eliminate it I wouldn’t know when something was wrong. Athletes CHOOSE to be hard on their bodies and ignore pain or in some cases pretend to ignore it and self medicate without proper supervision. I am from a football family ( I played myself, quite well might I add till age 16, when I could no longer ignore the crippling pain I endure daily now ) we were taught to play through the pain, now I use a cane at 26, I have a wheelchair bound uncle, and severely crippled aging family members. They ARE in pain, and regret ignoring it in their youth, I regret listening to them as a child as well, I doubt it’d be this bad this soon if I had listened to my body, and not my family… Perception and how you tolerate pain is one thing, but you can cause serious damage when you believe its all in your head and you are above it. Pain is an indicator of a problem, if you ignore it, you may ignore a serious injury or illness, and suffer for it the rest of your life. Do Not Tel Me Its Mind Over Matter. A decade of suffering begs to differ. Also, NEVER tell a chronic Pain Sufferer that you feel seeking hypnosis or a biofeedback machine ( easily obtainable if you have money ) requires too much effort on behalf of the a patient, you have no idea what a person in chronic pain is willing to do in order to get relief, I for instance have had dozens of painful, invasive treatments and experiments in hopes of fixing my problems ( alas there is no cure for my disease ) all in hopes of minimizing my pain, I have traveled hours on end just to get to certain specialists and surgeons. There is more effort expended here than it would ever take for me to make an appointment with a hypnotherapist for a session. PLEASE unless you feel it, don’t comment on it. One research study does NOT make you or them experts, and honestly when I read this, all I could think was you have NEVER gone through a pain you knew would never stop, and have assumed that since athletes ( who pay for their reckless and extreme lifestyles later in life ) are able to play through the pain and perceive it differently while in their prime and making sure the entire world knows it, that people who are not must just be weak, and unable to cope with “normal” pain because it requires too much effort on their part to go see a mind bender or someone who believes an electronic device designed to monitor the way your body functions will help someone cope with their pain ( yep, it totally tells someone when their muscles are tense, what their temp is, heart rate and so on… but it does NOT help someone in pain )… it may help them figure out what is going on with their body while in pain, but you seem to miss the point where people with chronic pain ALREADY know their body, and whether there’s a machine telling me I’m in pain or about to be makes no difference to someone with an INCURABLE disease… For example… I KNOW when I’m going into a flare up, and KNOW there’s nothing I can do at all… the pain will come and I will have to cope, plain and simple. A biofeedback machine is useless to anyone who already knows whats wrong, and hypnosis designed to trick your brain into not feeling pain is a foolish notion for anyone who needs to use their body’s pain cues as indicators of more serious issues.

      1. How long did u try biofeedback ? I’ve been reading on it a bit. Going to try it soon. My attitude is Im going to be healed. I refuse to hear or think otherwise. I’m not giving up!

        I started trying essential oils & finding some relief.

        Acupuncture & cupping bring some relief too. Bought a cupping kit, so I don’t have to go in & pay more $$. Use it 1-5 times a day.

        Please believe you are going to be healed. We all are.

        I’m very curious your experience with biofeedback. Agree everything costs so much $ and need to budget each thing out. Praying for you!

    2. wow mate, you are CLEARLY not a chronic pain sufferer, and you are the exactly the kind of person that makes life hell for the rest of us – I have NUMBER 2 on the national organization for rare diseases most PAINFUL conditions – so stop saying the word ‘somatic’ when you have no idea what you are talking about – this comment is HIGHLY innapropriate here. Everyones pain is different, but you sound like every quack who doesnt care enough to research a disease to treat it.

      1. R.R…..I thought the same exact thing as I read “Mates” post. It is very clear He has no idea what people deal with here. Its best Mate if you do not post anymore, you clearly are out of your field of expertise….

    3. You’re assuming the chronic the patient has bumps and bruises as the cause of the pain, such as skate boarder, etc. I invite you to live in my body and experience the pain of CRPS/RSD and reconsider your insensitive post.

      1. But there is hope for us !!!

        I’m going on 6 months & reading people recover from this. We have to. Praying for you.

  11. I have had chronic pain since 2004. It is daily, and like the letter stated, I may be able to walk the dogs today, but does not necessarily mean I can do it today. Lately, we have moved. With that, comes a new doctor, who “has been in the business 20+ years, and has seen what narcotics do to a person.” He is unwilling to issue me my pain meds because he is against narcotics. Yes…. time to find a new doctor, yet again. Being new in a new city is difficult to find just the right doctor. Pray for me that I am able to find a doctor who understands chronic pain and just what it can do to you.
    I’ve been very ill these last 2 weeks. When I called the doctor to get his intake on whether or not I should go to the ER or have him see me, he again brought up the narcotics and thinks I’m just going through withdrawal. I need pain meds to MAKE ME FUNCTIONAL EVERY 6 HOURS. I’m frustrated not only with the doctor, but with the pain that seeps in my nerves, muscles, tissues, spinal cord, hips, groin, legs, shoulders, lower back and neck every waking hour. The pain will wake me up from a dead sleep, as well. I would like to see the medical profession with this kind of pain and see how they deal with it. Don’t talk down to me. Give me hope…..

  12. Susan I can totally relate to what you are going thru. I moved for a year and had to change/find all new doctors and instead of seeing 2 that worked together for my pain mgmt I had to go to 5 separate ones in TN. Luckily I’m back in FL at my reg drs but dint give up no matter how frustrating it is. As to this letter it hits points that I’ve been stating for the last 4-5 yrs w/o “regular” ppl hearing. I posted in hopes that they will c once and for all how this effects us. Keep your chins up and prayers to all!

  13. Thank you ever so much for your words of wisdom. I have had chronic pain (RSD/CRPS) since 1993 and I could never put in to words what you have done here. Thank you for saying what I couldn’t.
    Thank you and God Bless,
    Michele

  14. I am so empathetic with all of you who suffer from RSD, or any other chronic pain. I was in the prime of my life. I was 42, the median age of developing RSD. I have a great husband, Bob, my kids, Dustin who’s 27, Cody 26, and Raechel, who graduates from HS on Friday. Before RSD, I was the picture of health. My daugher was almost 10, and the boys were graduating from HS, so she had to take care of me, along with my Mom, bless her, and my darling husband. The guilt you feel for having the disease, causing family to have to do everything for you. The pain, and complaining, the lack of sleep, lack of drive to do anything, as you know it will cause more pain. I’m sorry for the lady who suffered a car accident, and had a baby. She needs our prayers. I hope in the near future she will be able to have that baby she wants so bad. I pray for all of you who suffer. I take Electronic Convulsive Therapy, only 2 times last year. It gives immediate pain relief, like you were before RSD. It sends messages to your nerves to stimulate them, and away goes your pain for months on end. Please ask any question you have, and may ABBA, GOD, YAWEH, be with you.

    1. I, too, “lost my life” at 42! The prime…and I was thinking “40 isn’t so bad!:)” Then, an auto accident happened. My doc told me from the beginning “you did it all wrong”. You need to break something – have something you can show, otherwise, few will be willing to give up their time to help. Twelve years later… how true. I love being around people, but isolation keeps me at home, and others are SURE they would be bothering me if they visited (no matter how much I say to come). My husband get’ it – about 95% of the time. Only one friend really gets it – the emotional aspect of pain, what it does to your being, and having no one to really call on to help, unless you are willing to pay. I had two teens, who didn’t understand. They are grown, and my grandchildren are a joy. When each one is old enough, I gets some cars, and explain what happened to “Nana”. They have compassion, but I still feel guilty. One thing about Chronic Pain/Illness, is the WRONG person feels guilty. No one should feel guilty, it happens. Compassion and friendship is the best medicine, but it the first to disappear. Sad. I feel so bad for those who have posted in your situations. I don’t have much to offer, except to research all you can about your issue, and check out every avenue for help. Homemaking classes at High Schools have girls that might be happy to assist you….and don’t require alot of money. Keep doctor shopping until you find one who is supportive and believes you. You do have patient rights, and treatment for your illness/pain. Keep on surviving!

  15. What a wonderful work of art this letter is. I am what doctors refer to as a train wreck, and deal with multiple types of chronic pain. I get particularly frustrated when someone says I’m milking or faking the pain because I was able to go shopping yesterday, and in bed today. I could never have understood it until I was here myself, but this letter could go a long way toward helping others understand and deal better with those that suffer.

  16. Great Book for understanding the pain matrix – Highly recommended – Explain Pain – David Butler – NOI group is leading this wave of understanding pain. I wish you all the best as I’m a 36 yo x- athlete dealing with chronic pain and the social aspect has been the hardest part for me to deal with. I am currently a Chiropractic student and in a way I am grateful for my condition as it will help me understand what my patients are going through in all aspects of life. The right people are out there to help you it just may take some research and time. So don’t give up hope!
    Take Care and I thank the Author of this letter as it doesn’t relate exactly to my condition but it certainly hit home

  17. I have lived the last 19 yrs. in chronic pain from Fibromyalgia.. Yes, it is a REAL syndrome. My brain says ouch all this hurts..my body responds to my brains signals..My eyes reveal pain.. My face says I hurt, my heart breaks because I want to do the things I used to do before my brain got short circuited.. My family, friends, doctors, nurses, all think I’m a little coco..I do too at times..I have learnded to live with this pain, Yes it’s true you do eventualy learn to live with it..Pain just becomes part of you..You find yourself one day not even realizing you are in pain..No drugs help with Fibro, pain meds. don’t do a thing..So why waste my money they don’t help anyway.. This letter was so well written I think that everyone that lives in chronic pain should send this to all their family ,friends, doctors, nurses,anyone that they have constant contact with from this pain thing.. Bravo to the author..Stay the course all you people that live with pain..We all have to stick together and encourage each other..Thanks again for putting this letter online so we all can relate and send it on to those who need to understans “us” a little better.

  18. Thank you for this letter it explains to people about being in pain,it is true you learn to live with it.Ihave Dystonia which is a chemical imbalance in the brain,it causes my neck to go into spasms like severe cramp,i was given clonozopan as a muscle relaxent but they did not work so i came of them because i did not want to get reliant on them.It is true you want to do things but your body says no.It is very hard sometimes when you are in pain.You just have to take one day at a time,and do what you feel up to.May god bless all of you who are in pain,we may find relief some day.

  19. Hi each and every one of you. Susan B, thank you for the comment, I think it was intended for me. I want to pray for each one of you tonight, that God be with you and let you have less pain to none. Father, please help us to remember we can rely on you no matter what, good or bad. Help us to cope and give us peace and hope, when noone else can. We love you and can’t wait to be with you. We all know that living is hard, but when you’re in constant pain, people don’t seem to understand. Please Father, don’t let another person ask, ‘how are you’ or ‘you look better’. These are words that cut like a knife. I pray that YOU Father show us the way to better understanding our disease. Bless each of you and may you rest well knowing that JESUS will be coming for us, and we won’t suffer anymore. Love, Sylvia

  20. I don’t know why the time says 4 something in the morning, when it’s actually is 9:30 pm.
    Well I guess thats where the saying comes from, time flies, or flys? Bless you again.

    Your friend always, Sylvia

  21. hi,
    I feel a great load off my shoulder and cannot wait to print your
    story to people who dont understand.I loved it when you
    described your pain as one minute you will be fine and
    then the next back to pain and how people just dont understand
    especially if you have one good day.Alot of people have judged
    me and think that im am faking my pain and i dont want the
    worst for them but i wish they wouldnt judge especially
    when i was the hardest worker at my job.I have to
    overcome alot of hurdles and arguements from this pain
    and this is what i dont need,the pain is already the
    biggest hurdle of my life and i dont need what else
    comes with it.THANKYOU may god bless you!

  22. This needs to be given to every doctor, nurse, health worker and medical student. Especially in light of the fact that the medical community is taking away pain meds for veterans who do not have cancer but ONLY have chronic pain.
    the worst of it is having an invisible pain issue. Everyone even your doctors believe you are either drug seeking or faking. Family and friends think that if you just pull yourself up things would be better. After all it’s just pain……I believe in the coming months suicides among chronic pain patients will soar as our medications are taken away for our own good. I hope any veterans out there will write their stories so there will be a record of our governments war on veterans in chronic pain.

  23. I so wish everyone could have a copy of this when they make comments like Oh, you must be okay now. or You don’t look sick. If they only knew.

  24. I read this, sent it to my boyfriend and posted it on Facebook. I have re-read it 4x this morning and find myself in tears each time as it explains that I try my best and small gestures mean so much. Thank you so much for posting it :-))

  25. Thank you for writing this letter. Having chronic pain is not a choice. I am fortunate that I do have days where my pain level is low, I feel pretty good, do to much, then I pay for that dearly. My pain comes on fast, makes me feel horrible, can’t find a position that helps it. It keeps me up all night, then I feel panic, when it hurts so much to even breath. My only solace is, I know the severe pain will pass. I have a wonderful pain management doctor, who himself has and understands chronic pain. So, please don’t judge something you don’t understand. Don’t tell me to try to just take an advil. I am not a drug seeker, I take my medications exactly as prescribed. I don’t feel euphoria from my medications, they don’t take all the pain away, they only enable me to care a little less about the pain I am in. To all of you that understand….thank you! bless you.

  26. OK, Mr Author Unknown, get out of my head!

    But seriously, it is like I wrote that piece myself (provided that I was that articulated).

    Thanks for sharing this. Let’s re-share the heck out of it so more people can have a glimpse at what it is to live in constant pain.

  27. I have had a problem with my spine from the time I was 17yrs old.I have had 4 surgerys frist at age 26.I had lost all use of my bladder.the second time the doctors let me deal with another busted disc for a yr.That just left me with nerve damage in my legs.the third was a fusion so I wouldn’t lose the use of my legs.the forth was a fusion in my neck.My pain has been most of my life.I have been called a fake along with other things.I have spent months in bed because I couldn’t sit or stand.I tried to work jobs just made things worse.My whole spine is messed up yrs ago you could get pain meds.It helped but pain never is gone.Now all pain doc want to do is shots in your spine that don’t work a little pain med.Even right now writing this makes my arms and neck hurt.I can’t clean my home right anymore,I can’t do most of the things I use to do I have depression problems now I feel unwanted,unloved,just useless. By the way I am 54 now.Even when I walked funny or couldn’t stand up.you would think people would get it. but no if the can’t see it it’s not there.I am just tired now there is no real help out there any more.some people are just mean and judge.

  28. I came across this page through google. I was said to myself oh my word this is exactly what I have been trying to tell others. This letter says it all. Thank you so much for this letter. I suffer from RSD-reflex sympathetic dystrophy and its a blessing to know that someoene out there has the words that I have been trying to make others understand for so long. Thanks again. I am staying positive never giving up keeping the faith and smiling even if I am dieing in pain.

  29. I wish I had this letter years ago when my pain first started. I am lucky in that I know exactly what causes my pain and how those areas were injured. I’ve lived with pain since I was 12 (I am almost 42) and it has gotten worse over time to where I am now, in extreme pain all day long. Thank you for posting this letter, most of the ppl in my life now get this very well, but this letter will be helpful to many other people.

  30. This is it! It breaks my heart seeing how many people feel this is coming from their heart too. I hope you all have a small pain day with a clear head, holidays are hard when your feeling miserable. Xx

  31. Thanks for this letter….its everything I want to say but can never find the words. I have LPHS, which is a rare and very painful kidney condition that some doctors don’t even recognize. I have shared this with my family, friends, and others I know suffering from chronic pain. We are all grateful for your letter…..

    1. Hallo Melanie,
      Ook ik heb LPHS, ik ben erg benieuwd hoe en door wie je behandeld wordt. In welk land woon je? Gebruik je pijn medicatie? Zo, ja welke?
      Ik ben een nederlandse vrouw, 55 jr, heb 8 jaar LPHS en heb net een drastische verhoging van medicijnen gehad omdat de pijn weer toenam. Sinds 2 weken ben ik volledig arbeidsongeschikt en kan mijn werk, als leerkracht in het speciaal basisonderwijs, helaas niet meer doen. Omdat de verhoging van de medicijnen de pijn nog niet voldoende heeft gereduceerd, ben ik benieuwd of bij jou misschien andere behandelmethoden zijn genoemd/toegepast. Mijn omgeving is gelukkig heel begripvol en behulpzaam en mijn behandelaars nemen mij allemaal serieus. Ik hoor graag van je, groet Berna

  32. Thank you so very much for this letter. I will be using it! I wish I would have had it at the very beginning, it would have made my life a little easier!

  33. Thank you for this letter! As a person with Chronic Pain I live this every day at 34 years of age. This sprung tears to my eyes and made my heart ache to be “normal,” but I know I will never be. I deal with a lot of people who sit there and say “you’re too young to hurt all the time” or “you look healthy enough to me.” It makes me sick how people will judge you on looks alone and never care to ask how you are feeling inside. I pray for all of us that deal with this and I hope that one day they will find a cure.

    Sincerely,

    Mishael

  34. Yes, as everyone else says, thank you, this describes daily “Life” very well for both my wife and I. She suffers five levels, I four, degenerate disk dis-ease; lumbar and variances range from a “great” 6 to off the chart, way over “10” on the pain scale hour by hour.

    People who don’t have a clue want to “talk about it” and those that don’t think “you’re a faker”, and that’s just the tip of the iceberg. We hate the meds, can’t do several of the “options” of treatments and have already been through everything at least once if not several times, it’s not for lack of trying.

    Thank you “Anonymous”, you have summed it up well, very well indeed.

    Blessings of Peace,
    Al & Kay

  35. Thanks for taking so much time to put all of these thoughts and feelings together.
    They truly describe all of the things that chronic pain brings. I have suffered from
    chronic back, neck, and shoulder pain for twenty years. Talking to most doctors is
    a waste of time. They treat long term chronic pain sufferers the same as they would
    a person newly injured. In doing so they offer nothing. Beware of doctors that are just
    out to make money off you.
    I feely deeply for anyone that suffers from chronic pain and works or tries to work
    a full time job like I do. The guilt I feel about having to lie and do less than I want
    to do because I am not physically able eats at me. I am currently on med leave and have
    no idea when or if I can return to work. Enough about me. I wish you all the best of luck
    in your battle. Try as I do to find meaningful things to live for.
    Hayden

  36. thank you so much for this letter. It means the world to me. This is my like ever day.And know one knows what we go through every day.One minute your fine then you want take someone head off cause they dont understand.I’VE lived with Chronic pain now for 14 yrs .IT NEVERS GO ALWAYS….Sometimes i dont know if IM coming or going. I stay depressed ,cry,hurt,unnessary,useless,and I know i hurt people feelings dont mean to. When I read this this letter it made me cry .i just wish everyone could read this.It would make other people stop and think how grateful they really are to be normal and lead normal life.. Unlike us with Chronic pain and other things going onwith our bodys.tks so much ..I really needed to hear from all you..I spinal problems and nerve damage never know when my legs are going out from under me. no sign of falling down .AND I CAN BE STANDING AND NUMB FROM HIPS DOWN.. Once again tks for this….

  37. I understand what you’re going through. I wish my family members and friends were more understanding too. I have degenerative disk disease and anemia. Some days are ok. Other days I struggle to just to get out of bed or walk due to the back pain and muscle stiffness, and I tend to get tired easily. Even on a good day, I can’t stand for a very long time in one position without triggering back pain. Some of my family members don’t understand at all. They think that I should have the same endurance that they do….eg lift heavy things, paint walls for hours. On top of everything they get really angry and annoyed when I don’t. It doesn’t matter that I have medical proof.
    Since I look ‘fine’ and physically I look ‘strong’ because I have a large build, they just assume that I am. It’s so frustrating. It makes me feel very alone.
    Thank you for your letter.

  38. Thank You Anonymous!! I am going to personalize this, then give it to my husband and totally misunderstanding and non-empathetic Mom, who, (even after breaking my low back at 19, cervical discectomy with fusion of c3-c4-c5 at 33, and numerous other car accidents that did a lot of damage), thinks I am a hypochondriac.

    I saw a NUCCA trained specialist last week to repair my cervical issues. I am at stage four (highest stage) of spinal deterioration, and hopefully he can help me, since no one else has really been able to. I have had countless abuses done to my body in the name of science, that didn’t deliver what they try to promise. If any of you are familiar with NUCCA, please contact me. I am slightly skeptical, only because I have tried so many things.

    Best wishes to all,
    Chris

  39. This letter says it all! Thank You! I’m sitting here alone typeing at an angle to stop the numbness. Having a cervical epidural tomorrow (can’t wait) I have a wonderful Doctor. So many people, including family members think that you are faking pain, let them walk “just a day” in my shoes and they would demand to take them off. I wish everyone with this pain peace and hopefully, less pain.

  40. My low back pain started freshmen year of highschool and do to circumstances I have only recently, at 27, have been able to get MRIs which showed osteoarthritis and ddd of my spine. After years of doctors telling me I was to young for the pain I finally have proof it’s not in my head. 13 years of untreated chronic pain has put me in many bad situations and I can relate to everything you wrote.

  41. thanks. it is my problem too. i can relate.
    nobody really understands. when i have no pain ppl tell me u look good, happy .. sometimes they ask me how are you? u look better. and when i say not really, i can see in their face that they dont want to hear that. so why at the first place u ask !! :( i have been so emotional every time i feel pain ..
    i never complain, now even my family dont think i have any pain. often i forget my pain and listen to them and their issues. so often at the end of the conversation, we leave by me praying for them .. then all of a sudden i see myself left alone in pain and darkness. and it hurts a lot.

  42. I almost cried when I read this:
    “1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.”

    this is me. I imagine it’s the main reason that I only have one long time friend and am in danger of losing more people in my life right now. I’m great at making friends, bad at keeping them because I tend to let people down. Even though I explain to them (if I know them well enough) they don’t *really( get it. or else I just turn down invitations which has the same effect, essentially.

    oh.. by the way.. those avatars are HORRIBLE. (I assume I’ll have one beside my name, too.) :D

  43. Thank you so much- both to the writer and all of the respondents. I’m 30 and suffering chronic pain for about 2 years now. My mother had endometriosis and I was always very hard on her- I’m not sure I can even say I “get it” now. However, reading this has helped to put some things in perspective for me- I can’t make them believe and maybe my husband will never get it & keep accusing me of faking it or suggesting I stop the pain meds. I have hormone related headaches (not really recognized by docs :( ) and quitting the meds doesn’t make much difference- however taking them allows me- as another said- just to stop thinking about the pain and get by. I don’t know, but I really don’t want to know what it’s like for you all who have had 20+ years of pain!! Lol- but I really will try harder to understand- especially for my moms sake :)
    Thanks & good luck to you all!!!!
    <3 amber

  44. I have suffered with pain for 5 years straight now and I could have written this because it describes me exactly ( my pain won’t let me articulate as well as the unknown author has). My spine has 7 discs that are either ruptured or completely obliterated. 9 procedures later including a fusion and the pain is so great I have thought of suicide. Often. I am on a cocktail of meds and without those I know it would be the end for me. There is no “high” or “euphoria” when I take my meds, just a refuge for a brief moment from the clutches of the most sinister pain imagineable. I am in my 30s and need a cane to walk. My feet go numb and I have fallen numerous times. I am embarassed for mychildren and husband having to be seen in public with me. For all those with chronic pain, I get it, I really really do and I wish all of you the very best.. as we continue to strive for our collective cure from unending pain.

  45. This is such a beautiful letter. It makes me speechless … But most of the people don’t really want to understand even if they read such a letter.

    My Gfs talk about their colleague who says she has cancer, but they think she doesnt have, because she is very fit and she has beautiful hair, and they think she just wants to have more time off and that is why she tells everyone that she has cancer. When I listen to my friends and their discussion, i just think people are amazing!, and that is why they might have ignored every single time that suddenly i raised something about my situation. Once my friend told me – as a joke – maybe you like to keep seeing your doctor!! She said it as a joke, but it means she can think of such a unbelievable reasoning ! That is a pity that people can be so pathetic …. I only wish they experience constant on/off pain .. Because of these, i often get so confused. I then think whether my pain is real or fake? ! and it s a bad feeling. So what is real? bleeding is real? dying is real? a lot of my pain is because of people’s reactions .. I feel doubtful about anything and about my feeling and my pain too.. Only if I could remove all the connections and interactions.

  46. At age 52 and losing my job after 6 weeks because I missed 2 days of work and the first two weeks my productivity was low and work was sloppy. But, the amount of work and quality of work I can easily do in a 1/2 day is 70% greater than the work I can do in two days when in severe pain.
    I lost another job and all I have is my van and a few thousand dollars. This time I was smart. I knew there was a 50% chance I’d be discharged, but $3000 will not last very long.
    I just got health insurance and it’s $300/month. Last year I had no insurance and no money to see a Doctor. I spends everyday looking for another job and pain can undermine a job interview.
    I lost everything, my family, my house, my credit, my integrity and it’s amazing how people will express contempt for those who miss work, arrive late or leave early.
    The anxiety is a consequence of the chronic pain and the failures. And it’s the fear of being homeless again. I went from a $85,000/year job, new 2000 sq. foot house, a new car, a wife and son. I also had a 750 credit score.
    The credit collectors call and WOW it’s 10:30 PM and my phone is ringing. I do not answer knowing it’s a bill collector. Oh, if I could I would set up a payment plan. But I just did this and now after one token payment I cannot
    There is no place in America for me to turn to. I already lived at the Salvation Army for 3 months. My family will not allow me to live with them. My partner is unemployed and not very motivated. I wish she understood I mean no harm when I tell her we should end it. I cannot provide for her and she needs to go live with her parents.
    Again the humiliation of being discharged and not again; I tired to get a disability settlement after being discharged from my last job, but was denied. Wow, even well I missed work my productivity exceeded my peers. Probably because I am an overachiever. I didn’t follow the status-quo
    I have few friends and they are struggling to make ends meet. I cannot place any burden on their lives. Plus, I still cannot cope with rejection after dealing with it for years.
    If my pain was manageable I would have achieved the goals I have set. Goals and promises broken. Broken promises are seen as lies and today, I have no physician who treats pain.
    Do I use my health insurance and find a physician before I have to leave this best city known to have the best doctors in America or on my way to another unknown do I beg for help.
    Life is not worth living when nothing I can do will reduce the pain, but I am do not have the ability nor the selfishness to end mine.

  47. I am overwhelmed by the truths stated here and by all of you. Why why why are there so many of us with undiagnosed chronic pain?

  48. 24/7 jeadache since oct 2010. I have a mask i wear and it
    Does me no good. My marriage is crumbled and we fight everyday.
    Tired of trying. Bitter just bec im alive. The pain has taken all thats good from me
    Each breath is another second of paon amd enduring the mental anguish it has caused.
    I dont wanna die i wanna stop hurting however i dont believe ill achieve one with
    Out the other.

  49. This letter decribes my life and how I am treated by some people. I realize its hard for people who don’t suffer from chronic pain to understand or even sympathize because they don’t know how it feels. We can say it, but they still don’t get it. Its ongoing and it must be hard for them as well to “deal” with us. I know I am a handful now and can’t do the things I used to. I can’t work, I really don’t want to do much of anything most days. I don’t know if I would want to deal with that if the shoe was on the other foot. It is endless. My life is doctor’s and meds and mood swings. Its awful.

  50. It says so much that I never could. Comforting to hear of others going through the same things I am. Emailed this letter to family, only one replied back. Charming. They clearly don’t want to know, and yet get confused by my ‘odd’ behaviour. Reading this letter would do so much to understanding me!!! Have learnt to accept that people won’t ‘get it’, no matter how much I try to explain to them. Doctors are the worst with their attitude, and the only thing they have managed to do is make me worse. My thoughts are with you all going through the same things as me. We are your family who identify with and support you.
    Gentle hugs

  51. Thankyou for writing and posting this letter, its wonderful. So many times you have to try to explain over and over and then it feels like people think ‘oh its always all about you!’ and its so hard to get the message through. That’s exactly what I’m going through now although I have lived with Chronic Pain for 4 years, I’m only just starting to get out and do small things like walk to the shop. I know you know full well about Chronic Pain and I hope your managing your pain and living a happier life! Sending love and light to you :)))

  52. So glad to find this today as I have suffered for so many years. Today I feel I just cant take it anymore I am dying inside this letter has helped me know there are those just like me who really do know what I am talking about. I just want to give in today I cant think my body is relentless . This letter you post has truly helped me and I just wish I could send it to everyone who is in my life but not sure if they care and I can only hope this may help them to maybe understand jus a little. Pray for me today as I am weak, exhausted and just cant stand it yet I know I will.

  53. I think I’m going to link to this on Facebook. Excellent!!!! I was just diagnosed with lupus (amongst other things) after living with chronic pain without let-up since I was 12. I am now 55. I wish I could stop being shocked at how most people do not have any true empathy. Great post!!! Also, thank you for changing the website. It looks great now, and I can READ IT! Finally!! It took me days to re-find it, btw, ’cause I didn’t bookmark it and I was shocked to see this huge change. Shocked and grateful.

  54. You sound exactly like what my mother is experiencing. And all the things that you say not to say, I have said to my mom..such as trying to push herself. She also says that nothing will ever help. But with all the research that I have done one thing seems to have worked for people, and that is exercise. Of course I understand that when you are in pain the last thing you want to do is exercise. But the ones who overcame this, did exercise and all said that it was misery at first, but then little by little it started to get better. I also know that this comes from the brain. Our brain has incredible powers. One doctor described chronic pain as the brain having a memory. Sometimes the brain can make pain more intense, it can make pain be where there shouldn’t be any, perfect example is with amputated limbs. The brain forgets, or doesn’t realize there is no more need for pain in that area. So in a way, I think that there might be a way to “trick” the brain into thinking that the pain can go now, or that it shouldn’t be there anymore. It’s a matter of tapping into that. I wonder if anyone has tried hypnosis… But if someone wakes up everyday and says or thinks that the pain will never go away, then maybe that just adds to the brains ability to keep the pain there. Maybe trying to wake up and say “My pain will soon go away”.. My frustration with my mom is that she won’t even try little things such as that, or even deep breathing. She is convinced she will be like this forever.

    1. You are exactly the problem this letter talks about. You have absolutely NO IDEA what you are tlaking about. I feel for your mother who has to deal with your ignorance.

      1. Exactly. I used to be an avid runner, jogging 3 miles a day 5 days a week. I would spend hours at the YMCA running the treadmill, weight lifting, rowing and swimming. I tried pushing through the pain. I have a stair stepper, weights, weighted hoola hoop, leg weights, etc. Trying to force the stair stepper exacerbated the swelling in my foot from Plantar fasciitis. I tried to push on through Zumba, injuring my heal further. It now won’t heal up and I have to wear good arch support and tennis shoes in dresses to work and church.

        My neck and back pain due to degeneration and a chronic injury from an auto accident over 20 years ago has flared up. The hula hoop is fine…IF I don’t move my neck around. Lifting weights exacerbated the pain running down my right arm caused by my neck injury. And I sit here working a keyboard and mouse all day with ice packs laying on my arm and neck making the situation even worse. Working on posture and having a good chair is not helping. Prescription pain meds have no effect. Prescription anti-inflammatories have no effect. I go through bottles of bio-freeze and use a TENS Unit constantly. I wrap my arm in a heating pad just to sleep each night, with an ice pack under my neck and a neck pillow. This is not something they can treat so much as something they work with pain management on.

        I had approximately 3 hours of sleep last night. I cannot sleep on my right side or my arm throbs terribly. I cannot sleep on my back due to the lower back injury sustained when someone’s selfishness in trying to beat traffic seeing me stopped ahead, caused my dead stop car to be rear-ended by a 60 mph car hydroplaning when he realized he couldn’t stop and tried to break just to find the breaks wouldn’t stop him on the wet road. Years later I’m dealing with the fallout from it and never recouped my losses even then. Being relegated to sleeping in one position only is a pain in and of itself. And to add insult to injury, people who have no clue what it is like to fight depression because you cannot get enough sleep, to fight irritability because of lack of sleep and teeth gritting through daily pain, to drag yourself through another day of it just to listen to their advice on something they haven’t ever dealt with…

        Walk a mile in another’s shoes (or remove the beam from your own eye), before offering advice to remove the speck from mine.

  55. I suffer with chronic pain and have done for some years now. Could no longer work as a PT which I really enjoyed so I learned website design.
    The pain makes me feel so depressed and sometimes angry while some of the painkillers make me feel buzzing which I don’t like all the time.
    Sometimes I feel so low that I cannot do all the normal things like even jog.
    The one thing that I used this condition to make the best of was I read books all day long and make websites online so my mind is kept active so at least I get some enjoyment but sometimes on painkillers you wish to come down and not feel it but the pain is so bad. Recently the pain got much much worse and it was such that I actually wanted to be rid of it was that bad. I am very bad company at these times.
    My specialist put me a much better med recently and it really makes life much better for me and I can move about more as the only exercise I get is long walks by the sea. I may even be able to run soon but the pain is more under control. I wouldn’t wish this on my worst enemy the depths of despair at how I feel at times when all I can do is lie down for days on end.
    But it is more under control now.

  56. Thank you for this wonderful letter. Like everyone who has left a comment, it sums up my thoughts & feelings. The past 6 months have been hell….. I feel like no one believes me. I want my life back and be pain free. Big hugs and love to all of you who have left a comment. The tears I shed whilst reading this are for you too. I pray that we find relief very soon. Take care xxx

  57. Thank you so much for putting into words exactly what my life has been like since 1990 and will continue to be like for good. It is so helpful to be able to share your words rather than having to explain things all the time, usually insufficiently, to numerous people which in itself adds to the pain. Thank you.

  58. I WAS DIAGNOSED WITH RHEUMATOID ARTHRITIS 12 YRS AGO. FOR 9 OF THOSE YEARS I WAS ABLE TO MANAGE PAIN WITH OCM. HOWEVER THE LAST 3 YEARS I HAVE BEEN IN CONSTANT CHRONIC PAIN. JUST THIS MORNING I RECEIVED A TEXT FROM MY SON THAT SAID ” MOM U NEED TO QUIT MILKING THIS AND GET BACKBTO WORK AND HANDLE YOUR RESPONSIBILITIES . THIS COMING FROM SOMEONE WHO NEVER WENT WITHOUT ANYTHING . THOUSANDS OF $ FOR HIS SPORTS, CLOTHES, CAR. ETC. I WORKED MY BUTT OFF , SOMETIMES WORKING 15-16 HR DAYS FOR 3 MONTHS STRAIT. I SAT IN MY BATHROOM AND BAWLED MY EYES OUT.
    NOW IM AT A POINT IN MY LIFE WHERE I NEED HELP AND IM ALONE TO DEAL WITH ALL THIS BY MYSELF.
    AFTER READING THIS LETTER IT IS EXACTLY MY LIFE. I AM GOING TO PRINT THIS OFF AND GIVE IT TO MY SON.. AND HOPE HE GETS IT.
    I LOVE HIM , BUT AM EXTREMELY HURT BY HIS WORDS.
    THANK YOU SO MUCH FOR GIVING ME A VOICE AT THIS POINT IN MY LIFE.

  59. I have recently been diagnosed with Interstitial Cystitis and have felt nothing but loneliness and I haven’t had anyway to describe it. The letter above brought me to tears. Because, now I know that though it may not be the same illness but it is a universal network or feelings and I am not alone. Thank you, this note got me through another day.

  60. I have struggled to put into words what you have so greatly accomplished. My many thanks and appreciation. Tears have wet my face this has touched me so deeply. I have new hope that those I love and care for will read your words and have some understanding of something that even I don’t always understand. I will also share with others that i know who are in the same place. Peace be with you.

  61. I have suffered chronic pain since i was 10 years old. I am now 21 and am just beginning to accept that there is no cure. I have a long way to go but I know I will get there. This letter is one of the best things that has helped me realise it’s okay and that I’m not alone in terms of my frustration and tears at no longer being able to go out for drinks with the girls or even do a load of washing. The guilt of knowing that has made me so guarded not to let anyone in or have a family of my own because it simply isn’t fair.
    This letter might just be my saving grace to allow myself happiness to know there are mothers and fathers out there with chronic pain that are getting through life.
    Thank you. This has helped more than any specialist and professor ever could.

  62. Your words ring so true. I can completely empathise with you. I also have lived in constant Chronic pain for 10 years now. Doctors know what has caused it but currently there is no cure, where I live a life on strong mix of morphine drugs. Being in chronic pain can be a lonely and isolating experience, it’s complex, you feel a constant burden on other people, you get frustrated when new techniques/possible cures get suggested. It effects every part of your life. It’s nice to have found your post, reading it, it makes you think there are other people out there, who know how you feel, it’s comforting in a way.
    Unfortunately chronic pain is still not fully understood in the medical world, I have been lucky (I’m also a healthcare professional as well as a chronic pain sufferer) but it helps dramatically if you have good support.
    I wish you all the best, and you will never be alone in how you feel. I certainly know what you mean!

  63. I have seen this letter around the web on the various chronic pain sites and where as it doesn’t really help me cope it does bring comfort to know that we are not alone in our suffering. Don’t get me wrong I don’t wish this on anyone not even those medical practitioners that are afraid to prescribe meds or even those that fall in to stigmatizing us as malingerers, I am just glad some one put down in writing what alot of us could not, and explained it in a way that people who do not suffer as we do can understand. Most of the sites I have been to deal with spinal pain, but some of them deal with other pain. I myself am at a loss for what it is with me, I suffer from debilitating chronic pain in both of my shoulders, elbows, wrists and hands. I have only been suffering like this for three and a half years, but it feels like a life time, and people seem to forget I am in constant pain because I do what ever I can to function at a slightly less that normal capacity. They don’t understand I am not the same person with the same capabilities that I once had. They can’t see anything wrong with me and don’t realize how much my life has had to change because of what I am no longer able to do. I had my license taken away medically because I am a liability now when I drive, and that is only one inconvenience. My daughter doesn’t understand why daddy can’t play because she sees nothing wrong. The letter was a way to let people know the frustration we feel while trying to explain it from our point of view. It was awesome and inspiring. I once tried to talk with my dad about what I was going through, and he dismissed and changed the topic because he didn’t understand. So I told him the best analogy I have seen on the web anywhere which was not noted above…. when you try to explain what you are feeling ask them is they ever cut their finger. Most people will say yes, so then ask them about how much it hurt, they will say that it stung or that it hurt like a son of a gun, i then tell them to multiply that feeling a hundred fold. give them a second to absorb that, and then tell them that they will feel like that every moment of every hour of every day for the rest of their lives… I ask them to contemplate what it would mean to feel like that all the time with no breaks and no chance for it to ever feel better. then I realize that some understand it and some don’t or just don’t want to.
    I have considered applying for a handicap decal for my vehicle so that (in my case with my arms) I don’t have to carry grocery bags so far to my car because I can’t support more than about 12 – 15 pounds, but the social stigma of people questioning me because they can’t see that I am physically disabled, was enough to turn me off that idea, but lets face it we are disabled… even if others don’t see it that way.

  64. OMG, you sound so much like Leslie. I’m truely sorry to hear of your struggles, we would never know it. Your right, people without chronic pain don’t understand nor can we feel your pain. All we can do is try to understand, support, and be compasionate. There are so many days where we have to leave Leslie all by herself and she can’t even get out of bed. The physical and emotional pain just depletes all her energy and this brings about confusion and self worthlessness. She can’t even deal with making and going to Dr.’s appoinments daily or keeping track of all her medications. We really need support groups to help each other out. Because the rest of us non chronic pain people don’t know and go about our merry ways leaving our loved ones behind to deal with their issue all by themselves. I feel bad about that, but I don’t always know how to help.

  65. Hi there
    This is so well written. I had an accident about 2 years ago, I actually fell.
    I did put a claim in (please dont anyone judge me for this)
    To be honest I am glad that I did, because I was taken to hospital with whiplash type injuries and was told I would make a recovery and now 2 years on, I havent. The most frustrating thing is, my doctor is lovely, he really is. But the whole NHS is terrible, the physio hurt me more than I have ever felt by showing me exercises incorrectly.
    the days off that I have taken from work because I am terrified of losing my job, but holidays is still affecting my work because no one does my job for me. But the immense relief that I dont have to go into work because I need to rest is wonderful.
    I am now 39 and my daughter is 8 she was nearly 6 when it happened and to this day, I feel so guilty, especially when she says things like ‘mummy if you are OK tomorrow can we go for a walk’ I have let that little girl down so much. I do actually feel traumatised by this, especially seen as I literally was very healthy, in fact on the morning of my fall, I had been training as I was doing the 3 peaks challenge – which I didnt do.
    My quality of life has been spoiled, not old age, something that wasnt my fault and feel that my life has been spoiled almost prematurely.
    Its very hard, its also very weird for me to handle being told I am a chronic sufferer.
    I go and see the doctor next week for a final medical, I am tempted not to go, I dont think they believe me to be honest. I just dont know what to say or to expect. I am scared, I feel very vulnerable when I am like this and I didnt see what I fell over, at all and I certainly would not have done this to myself at all. I take my hat to anyone who writes such a honest account of how they are feeling.
    Thank you for sharing it. x

  66. And thanks to all the helpful family and “friends” who laugh it off and call you a hypochondriac. If they truly understood why they just help pay some of the growing medical bills. I push through severe pain every day just trying to get through work. As a single mother it’s not as if I have a choice. And I frankly get sick and tired of hearing how I must not deal well with pain or that I’m a hypochondriac. Worse is laughter…like it’s all in your head. If it were then why is my trained doctor, who knows more about medicine than family or coworkers or friends ordering MRIs, X rays, EMGs and PT. Dontcha just love all the self proclaimed doctors?

    Even worse, I continue to have faith in God and pray daily that He’ll take this pain from me. But the well meaning Christians who say you have to believe you’re already healed (which was NEVER taught in scripture) or tell you that you must not have enough faith almost make you want to pray like David.

    When he shall be judged, let him be condemned: and let his prayer become sin.
    8 Let his days be few; and let another take his office.
    9 Let his children be fatherless, and his wife a widow.
    10 Let his children be continually vagabonds, and beg: let them seek their bread also out of their desolate places.
    11 Let the extortioner catch all that he hath; and let the strangers spoil his labour.
    12 Let there be none to extend mercy unto him: neither let there be any to favour his fatherless children.
    13 Let his posterity be cut off; and in the generation following let their name be blotted out.
    14 Let the iniquity of his fathers be remembered with the Lord; and let not the sin of his mother be blotted out.
    15 Let them be before the Lord continually, that he may cut off the memory of them from the earth.
    16 Because that he remembered not to shew mercy, but persecuted the poor and needy man, that he might even slay the broken in heart.
    17 As he loved cursing, so let it come unto him: as he delighted not in blessing, so let it be far from him.
    18 As he clothed himself with cursing like as with his garment, so let it come into his bowels like water, and like oil into his bones.
    19 Let it be unto him as the garment which covereth him, and for a girdle wherewith he is girded continually.
    20 Let this be the reward of mine adversaries from the Lord, and of them that speak evil against my soul.

  67. Wow – I can’t believe how much I relate to this entire article. If you switch out the word “pain” for the word “illness” all the above would still be true. I have had CKD all my life but became seriously ill at the age of 20. At age 27 I still haven’t had my transplant and illness is something I have to cope with around the clock. I also get severe kidney pains and now chest pains (along the way I also developed an aortic aneurysm ).

    I also have depression but I’ve had that since age 10 because of being emotionally and physically abused, plus the loss of my nan and my mum far too soon and a ton of other stuff so I don’t even know what I’m depressed about any more, there is far too much to even recall at one time that most people haven’t had to deal with.

    I hope you find something that works for you soon. x

  68. To whom it may concern, I really appreciate this page because you say in words on paper I can’t even say by mouth. I am going to show this to all my friends and family. Thanks Again!Sandy

  69. Wow! This letter was awesome! I have so many people in my personal life I would love to hand this to, and will when the time is right.

    Just want to say thank you for such a wonderful tool to help us get the message across to those who just don’t “get it”.

  70. Figaro
    I couldn’t have said it better myself! Thank you to whoever wrote this. I have printed it to show my family and friends. You have done a wonderful thing here. I can’t even estimate the number of lives you have touched.

  71. Kudos to my fellow chronic pain sufferer. Great job articulating our concerns and our daily struggles. Your letter will be distributed as necessary in order to educate and promote understanding. Thank you for your eloquence and for sharing it with us. Here’s to less pain & more joy!

  72. I just love your lwtter you wrote I wish i could print it out but my printer is out being fixed ;;;;I love your site;;God bless you;;;

  73. After 18 years of being in constant pain I could never have summed my chronic pain up this quickly, but I am so very happy that you could. I made copies for my family members. I think there are even some Doctors and nurses that should read this especially in emergency rooms. I’m sure I’m not the only one who has been thought to be a little crazy in the head when you try to make them understand how you are feeling. Most tend to think you are a person who just wants drugs. I didn’t choose to have chronic pain and I would be more than happy to be with out any kind of so called “drugs”. Thank you so much for your letter and for spending your much valued time to take the time for it. Minutes can seem like hours when you’re in pain.

  74. Thank you so much for posting this letter. As others have said, I could relate so well. I am also relieved to have another way to express how I feel, by sharing this letter with others.

    Thank you again. I hope you feel happy and fulfilled, regardless of your pain!!! :)

    Sue

  75. Well isn’t that the truth! Great letter. Problem for me is I already sent the “letter to normals” to family members a couple years ago. You can give it to them but cannot make them read it. If they read it there is no guarantee they will ever get it or desire to get it. Most of my family just doesn’t care. I’m the burden, the bummer, the party pooper……

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