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.

Thats 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

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10 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. Migraine Chick Says:

    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. Jenni Prokopy Says:

    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.


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