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.


Republished from Life in Pain

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  1. A very well written article! It covers most of the things we go through or confront. We live with invisible disease, and that is what makes it so hard for someone who is normal to understand.If we were in a wheelchair or wearing a cast, it would trigger something in their head, Oh an injury, they must hurt. But unless we have a visible body part hanging off, will someone ‘get it’ and sometimes even that is just not believable to others. I actually know a lady who told me she used to never believed people who complained of a headache, a normal every day headache.. why, because she never experienced one! So she just lumped those people together with others she thought were fakers or looking for attention or whatever… it wasn’t until she was in her late 40’s that she experienced her 1st headache, did she believe there was pain … seems unbelievable doesn’t it? It also makes it harder for us to concentrate on getting better or trying to block out the pain or fatigue for awhile when some one is constantly prodding you, making you feel like a liar or worse. Little do they know, we would rather not have to deal with what our bodies do to us everyday. I like most people, would rather have a ‘chance’ for everyday to feel great & go out, do things & work, play or even just clean the darn house! It gets boring not being able to do anything, or hurt so much you don’t even want to open your eyes. Why do people that do not understand think we are having some kind of picnic? It is not fun. Invisible yes, but Believe it, it still hurts… if we could trade bodies for one day, I know the non-believers would sing a different tune. We just take everyday as it comes, and do the best we can moment to moment.
    One more thing… Please do not forget us! I may not be the best company I once was, but I am still alive and want human contact. I am not dead yet, tho there are days it would may feel like a merciful thing. I still love human contact, touch, voice even a message… that contact may be just the best medicine of the day. Gentle hugs…
    .-= Faythe @grammymousetails´s last blog ..From Savory to Noxious =-.

  2. I know that I don’t know EXACTLY what you’re going through. But you know me and my history of headaches. And it sucks. Pretty much I have a headache everyday. People don’t believe me. Some days it’s worse than others. As you, I can’t put my life on hold because I have headaches. Love ya, chick!
    .-= Cheryl´s last blog ..The Strength Comes From Within =-.

  3. Truly a right-on article on chronic pain. I am so thankful my husband understands that some days I can and some days I can’t do things. He’s seen me trying to cope and get through the worst of pains. Many times he’s wanted to take me to the ER, but I’ve told him no, because I’ve been around too many doctor’s that don’t understand.
    I tried to make my doctor understand that I need to go onto social security.
    She said “Why.” She doesn’t get it. I know she hasn’t because all the stuff I’ve told her and the doctor’s before her never end up documented in my medical chart. I don’t know what it is about military doctor’s, but they just put in what they want. They don’t put in what you’re telling them. Don’t they understand that we can get all our medical records for free and just read everything they’ve written and all the tests they’ve ordered and the test results. I think they only want to help the men and women who’ve actually served in the service to get financial assistance through disability and such, but I’m a spouse who worked for lots of years and paid into the system. I am now at a place I can no longer work in the field I was trained in. On many days I can’t type or spell properly. I have pain all the time, sometimes it makes me so nauseated I can barely stand to move an inch.
    I hear you. Just because you push yourself through to get the things that absolutely must be done, done, doesn’t mean you’re doing better or the pain is gone.
    I told the last doctor I saw that I was no longer going to be so polite when I see doctor’s in the future if I ever do, than maybe they’ll understand that I feel horrible and actually believe it. I’m not going to be nice to them anymore and I’m not going to hold back tears when I’m in their offices, because I think when you are and do they don’t believe what you’re saying to them, because they have no outward signs on which to base their so called physical assessment.

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