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Helping Others Understand: A Letter to People Without Chronic Pain

Wish that your friends, family and coworkers had a better idea of what you’re going through? This anonymous letter has circulated on forums and by e-mail for a few years, but is always worth repeating.

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 affects, 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’m not 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 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 not being miserable. So, if your 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 paralyzed and can’t 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. This is one of the hardest and most frustrating components of chronic pain.

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 ” You did it before” or “oh I know you can do this!” If you want me to do something, 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 the “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 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 think 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.” Chronic pain can affect 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 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 of forgotten just because I’m somewhere or I 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 has includes failure, which in and of itself can make me feel even lower. If there was 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. Its 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, its 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 my situation unless you have been in my shoes, but as much as 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 to 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 normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

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

Someone asked if I thought it was appropriate to share the letter with her family and boss. Will it backfire if the recipients haven’t shown an interest in understanding your pain?

photo credit: desi.italy

21 Responses to Helping Others Understand: A Letter to People Without Chronic Pain

  1. emily says:

    i don’t know if it’d backfire….i’ve seen letters like this before, and have sent it on to my family. my family is very supportive, and so i just wrote a note along with it to say ‘you’re all supportive and i love you, just thought this might help you understand my day-to-day life a bit better’. but if they are NOT supportive or really need to hear this, i’m not sure how well it’d be received.

  2. MaxJerz says:

    Kerrie, I don’t know if you’ve seen it before, but Teri Robert wrote an excellent letter for headache/migraine sufferers to share with those who don’t “get it”: http://www.helpforheadaches.com/lwfiles/family-mig-letter.htm

    I know that quite a number of migraineurs have shared this letter with their families or bosses with good results. Perhaps this may help.

    ********
    Thanks an excellent resource. Thanks!

    Kerrie

  3. Megan Oltman says:

    It’s a great letter, and a good question! For years I thought I was the only one who got defensive when people suggested a cure – that my defensiveness was a character flaw. I’ve come to think that people want to fix us – sometimes this is out of love and sometimes out of a desire to make a problem go away, to not have to feel bad. I think if someone is volunteering commentary on our condition, the letter is a good response. It’s not angry or critical.

    By the way Kerrie, congrats on the new site design. It looks good!

    – Megan Oltman – http://www.meganoltmanfreemybrain.typepad.com

  4. Terri says:

    Kerrie, what a beautiful letter. You describe our situation so articulately. I will pass on this link. My immediate circle of people is immensely supportive, but I find many outsiders (casual friends, colleagues, even doctors) really lack compassion and start asking if I tried acupuncture and whatnot and then start talking about their wife who gets mirgraines once a month. Most people don’t care, or don’t get it. The ones who do, I share with, the others, I smile and FAKE my way through the day with.

    I have a lot of anger that I have to compete in the same world as well people. Sometimes I wish those un-compassionate people (the ones who ask me “so you were sick AGAIN yesterday were you?”) would experience what I feel for a couple of weeks. It might change their tune.

    But my inner circle of people are amazing and understanding. That’s what and who mattters most, I guess. The rest are just un-enlightened and some have not faced many life challenges to bring them humility and care for others.
    Great post!

  5. Barbara K. says:

    I hadn’t seen this letter before. It’s very special. One paragraph I would add is:

    I know you care about me and feel helpless in the face of my pain, because you can’t make it stop. Please don’t allow your difficulty in tolerating your own helplessness drive a wedge between us. I don’t need you to make the pain stop. I need you to just be a friend.

  6. I would love to give this letter to my boss, because he has been really coming down on me about my performance at work due to my migraines.

  7. terrific letter; thanks for the reminder! and your new site design is supercute. :) love it!

  8. stu says:

    Great letter i am going to post it on my myspace. Its nice to know Im not alone in my suffering. Its been 5 years now with daily migraines/headaches.

  9. Kevin from NY says:

    Wonderful and moving letter. I’ve been a daily headache/dizziness suffer for the last 6 months and have been getting more and more depressed each day. It’s good to know that I am not the only one because , often times, I feel like I am. Thank you for maintaining this site and good luck, everyone.

  10. Leeloo says:

    Wonderful letter. It gets every feeling and emotion across effectively minus the anger, which is something I have a difficult time keeping out of my own pleas for understanding. Thank you.

  11. Chris says:

    First off I would like to say may YAWEH GOD and his son YASHUA bless you and each and everyone of us that suffer from chronic pain,may HE touch your hearts and bless you.I am 38 years old and I have been suffering daily chronic low back pain,hip pain and stiffnesss for over five and half years now.I have been diagnosed with lumbar spinal stenosis,chronic multi-level degerative disc disease,three of my lumbar discs are gone and my vertabre are bone to bone,also I have austioarthritis,I have nerve damage in my legs and has started to effect my hands I am always droping things and numbness also.When I read this for the first time I feel like I wrote it,I could never understand how my chronic pain affected me mentaly and emotionaly the author put into words what I myself haven’t been able to,I cried because I realized that I wasn’t alone in my daily suffering and it gave me great understanding of what chronic pain has done to my life and relationships.All my side of my family lives in other states,my wifes family live here.I don’t hardly ever get phone calls from my parents,brothers or my daughter,I feel like they don’t understand what I really suffer through each day and it’s easier for them to not call and be reminded of my condition because it brings them down because they can’t help me.I know they love me but I need them more than they’ll ever know.I am going to send them all a copy in hopes that they might have a better understanding of what I have to live with each and every day.I only have my wife who admitted to me after she found this and read it that it helped put things in perspective that she did’nt have before.Since she works 8-10 hours a day I’am alone most of the time,I no longer have any friends,I ‘ve lived in a differn’t state than where I grew up for the past 12 years,I use to own my own buisness and the “friends” I thought I had have been no more since I’ve became disabled and had to sell my buisness,so I really have no support system except my wife and mothernlaw who are both busy,but helps all they can.I thank all of you here on this site and my wife for finding it for me,It helps to know although I am alone at home most of the time by myself that you all our out there,I thank you all for sharing and I will pray for all of us who have to endure this living nightmare called chronic pain,and if anyone would like to talk via e-mail my name is Chris and my e-mail is chrismdunham@aol.com And I will reply to all emails actually I pray that I may hear from you so I don’t feel so alone in my suffering,GOD BLESS each and everyone of you. all my love to you Chris

  12. Susan Ferrio says:

    kerri,
    thanks for much for this letter. I feel exactly the way you do…I am so glad I read this I printed it so my family could read it i dont know how they will respond but thats ok…suzie

  13. Julie says:

    Honestly, with the reality of our culture (in the USA) being based on convenience and survival of the fittest, it may be a lot to ask for someone to understand what any of us are going through at any time. I opt for compassion! I didn’t understand what the death of a parent was until mine died. I CAN have compassion and love.
    “Let’s not love in word or in tongue, but in deed and in truth.”

  14. Jamie McDonald says:

    Wow!! Wonderfully written. I suffer with debilitating chronic pain and this is the best description/explanation I have read to date. It literally defines how most people with chronic pain feel. It most defiantly gives an explanation to those who do not understand. Well done. Those who do not get it, do not have some level of compassion or understanding after reading this then they never will.

  15. Paul Auzston says:

    Kerri,

    I have been trying to put these words on paper for almost 5 years now, for the exact reason that people “just don’t get it”. My pain is so bad at this moment in time, that all I can think about is dying, I don’t want to live anymore in this amount of pain. I know that suicide is not the answer, i have contemplated it before, but it’s part of what chronic pain does to me. I just want to die, not just so I won’t hurt anymore, but because I don’t want my family to suffer my condition anumore. I want them to have a “normal” life without me in it to drag them down or to ruin their fun because I just can’t do fun things anymore. I am going to share this letter with my friends and family, most of them won’t care enough to read it. But for the few who might care, the perspective they will get from it may kind of help them understand what I am going through.

    • Brenda B says:

      Kerri,
      I feel for you! I know I don’t fully understand what you are going through, but I do understand wanting to die because of the pain and not wanting to put your family through it. But they would be so hurt and damaged if you chose to leave them. Please hang in there. I wish you some peace in the middle of your struggle, and I hope you have some precious people in your life who do understand.

  16. Brenda B says:

    Thank you so much for this. It is good to know that I am not the only one who has bad days that stack up together. I have a lot of good days, but I have spells where the bad days are pretty bad and it takes time to bounce back. I really try to hide my pain and fake being okay because I know others are tired of hearing about it, but in hiding the pain, they think I am doing okay and am up for whatever they have to throw at me. As the bad days become more frequent, and the docs have no answers, I get pretty depressed. So when people that are my support system tell me to suck it up or tell me I don’t want to be like so-and-so and their made up illness (I am willing to bet so-and-so is in the same shoes I am, if not worse), it hurts. Deeply.
    I am glad to know it is okay to not participate. It is okay to stay home and rest. I keep pushing myself to go out, to participate, and it only makes my recuperation longer or sends me reeling back into pain issues and depression. I am so very thankful to see your letter as it assures me that I am not imagining my pain, and my depression is understandable.
    I don’t know if I will share this letter or not. I have a husband who does get it and 3 boys that are pretty terrific at making me laugh when the chips are down. The others in my life have been pretty damaging of late, and there are times when I should not have to explain myself. But maybe if they ask, I will have this to share with them. In the meantime, I am grateful for a letter that lets me know I am not alone, and it is okay to disconnect from the outside world for the purpose of healing. Thank you, thank you, thank you.

    • Brenda, I’m so glad the letter has helped you. I didn’t write it (it was written anonymously), but I’ve fuond it very helpful, too. Learning to take care of myself is probably the hardest and most important skill I’ve learned!

      Take care,
      Kerrie

  17. Victoria howard says:

    I have had chronic pain for over 25 years. I have 17 different bone joint in tissue diseases among other issues. I’m sick of it I’m tired of it. Now they want me to have another neck surgery which I’ve already had. & a back surgery. With brittle bone disease I just don’t think it’s going to work. But how do I live like this I’m tired of it. Your letter was wonderful I tried to post it on my page. To make family and friends understand what I’ve been through and going through. God bless you well I do understand Victoria Lynn Howard on

    • I’m so sorry you’ve been through so much, Victoria. The letter isn’t mine, but was written anonymously and shared around the internet — I agree it’s great. I wish you all the best.

      Take care,
      Kerrie

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