This post finishes our series about chronic pain and the family, and with it, I wanted to share this version of a “Letter to Those Without Pain” I saw recently. In trying to find information about the original author, I learned that Ricky Buchanan is credited with writing the original “Letter” about living with Chronic Fatigue Syndrome. Her original letter has then been modified for other illnesses, often by unknown authors. Ms. Buchanan’s website is www.notdoneliving.net.
“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 don’t understand even a little about chronic pain and its effects, and of those who think they know, many are actually misinformed. In the spirit of informing those who wish to understand, these are the things that I’d like you to understand about me before you judge me.
1. 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 have work, school, family, and friends, and most of the time, I’d still like to hear you talk about yours too.
2. 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 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. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I’m merely coping. I’m sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome to.
3. 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 dosen’t mean that I can do the same today. With a lot of diseases, you’re paralysed or 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’m 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.
4. Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I’m 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, 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 don’t take it personally. If you’re 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.
5. Please understand that ”getting out and doing things” doesn’t necessarily 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 to do some things to “get my mind off of it” may frustrate me to tears and isn’t correct. If I was capable of doing some things any or all of the time, don’t you think I would? I’m working with my doctor and I’m doing what I’m supposed to do.
6. 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 langauge. 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’s not created by depression.
7. Please understand that if I have to sit down/lie down/stay in bed/take 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 I’m right in the middle of doing something. Chronic pain doesn’t forgive, nor does it wait for anyone.
8. 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’ve been made sicker, not better. This can involve side effects or allergic reactions. It also has included 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. 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.
9. 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 know it’s difficult to understand my situation unless you have been in my shoes. But as much as possible, I’m asking you to try to be understanding in general.
10. In many ways I depend on you – people who aren’t sick. I need you to visit me when I’m 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’re my link to normalcy of life. 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’m able.
I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.
This is a wonderful letter. I hope you share it with those close to you. Please visit Ms. Buchanan’s website to let her know your reaction.
11 responses so far ↓
Erica Brokaw // Jan 7, 2008 at 9:01 pm
Thank you for putting the chronic pain we deal with into perspective to those who can’t possibly understand if they don’t have it.
I suffer from bulging disks in my neck; torn/ruptured disks, degenerative disk disease, hypotrophic facet disease, and ligamentum flavum in my low back and hips.
Mentally, I am bipolar-mixed.
A couple friends from my back support board found this and suggested we all read it. I’m so glad they did.
Thank you again, and God bless.
How to Cope with Pain // Jan 8, 2008 at 6:35 am
I’m glad you found the “Letter to People Without Chronic Pain” helpful! I’d be interested in knowing what your group’s responses and insights are.
Shar // Jan 8, 2008 at 1:40 pm
Hi Ricky,
I had found this letter a couple years ago on the web and I made a copy because I had a friend who just didn’t get it, after she read it she cried. So when I came across it again the other day I wanted to share it with others on the back pain message board I belong to. I am so grateful to you for putting what we can’t seem to put into words for ourselves. This subject comes up a lot relating to our spouses, friends, even our doctors. We usually just told others to take them to the doctor with us or try to explain it the best we could to whoever didn’t understand.
Your letter covers everything that we have not been able to put into words ourselves. I have never been one that was good about putting what I feel into words and to have someone like yourself that does it so eloquently is something I’m really greatful for.
So a big thank-you for ““Letter to People Without Chronic Pain” .
Shar
Arlene K // Feb 7, 2008 at 10:13 pm
Thank you for explaining chronic pain in a way that I have not been able to put into words. I’m so tired of hearing of others with Fibromyalgia that are doing things I can’t do. I’ve had this pain for about 30 years. I was told that it doesn’t progressively get worse, but I don’t believe that. I’m now 74 years old, and dread being asked how I am feeling. I just say that some days are better than others. And then I hear, “But you look wonderful”. I am printing your letter so I can show it to others and maybe they will finally understand.
How to Cope with Pain // Feb 8, 2008 at 4:26 am
Arlene, I hope the “letter” helps. It certainly is frustrating to have others not understand. Keep educating them!
Mike // Apr 20, 2008 at 4:34 pm
This letter touched on a good many things. However, it is too bad i found it so late. I had three torn discs in my lower back, which initially only cost me my career as a Firefighter/Paramedic. over the course of the last 4+ years since the initial injury, I have been through the gamut of doctors, PT, Holistic, and every kind of therapy, treatment and everything else. I was able to finally get one proceedure which would have repaired these discs, but the Worker’s Comensation Unit for the department decided that I didno’t need PT following the proceedure, which did not allow them to heal correctly, creating bigger problems, making the injury worse.
Between the loss of the career, the friends who drifted due to my not being able to go out and do anything, always being in pain, my own not wanting to be pitied, and then the medications, my marriage and family ife began to suffer.
The Morphine was doing horrible things to my personality and life, to where the stress on my wife from watching me in constant pain, the stress of the W.C. “Delay and Denial” practices, the problems with the pain meds…
She finally walked out three days after Christmas.
Since then, I was finally able to convince the Pain Management Doc that the meds he had me on were destroying my life and was able to get off the Morphine and onto another med that no longer controlled my brain and actions.
I am trying desperately to heal myself now, having given up on all the well meaning doctors and waiting for proceedures and approvals etc. I am able to move more, do more, and have become more like my old self…and have even begun to wean off of all pain meds to see just how far I can go without.
I don’t know if I will ever get my wife and family back…not even sure why I shared all of this other than to help people realize just what kind of damage Chronic Pain can do to people…the person in pain and those around.
I would give anything to be able to go back to that day and call in sick…if it would mean I could get the last 4 years of my life back as well as my family…
But if others realize that we need your love and support more now than ever before, that we do know how hard it is for all of you as well, but that sometimes we just don’ have the energy to do anything about it…maybe someone else, someone’s wife or husband who is considering leaving them, will think twice about it and realize we are still the same person you love and married…just being helod captive by a thing that robbed us of alot of what we once were.
How to Cope with Pain // Apr 21, 2008 at 3:11 am
Mike, thanks for your comment. I’m sure it will touch someone and make a difference. I’m glad to hear things are on the mend for you. Thanks for stopping by.
Valerie // Feb 26, 2009 at 1:24 pm
Hi There, I found your article when browing the internet for help on explaning my chronic pain to my children who are 22 and 19. I just lost my job recently because of my illness and I am the sole caregiver. My boss did not care how I was feeling – I sat in a chair for at least 12 hours per day and all I requested was a decent chair and possible flex work hours to work from home and her solution was giving me more work then firing me. My children have literally told me to ’slit my wrists’ or ‘you’re not looking for a job’ when I try to explain to them the need for them to contribute financially to the household. They do not understand that the financial stress/demands of being sole caregiver makes the situation worse. The pain wakes me up every hour of the night and my kids stay up and invite friends over sometimes until 2-3 am with no remorse and tell me to ’shut the f..k up’ when I crawl out of bed to tell their company to leave my house. I have 2 dogs that I love but it is a struggle bringing them outside for a walk. When I reach out to my children for help they ignore me like I am not there and I end up doing it myself, end up literally crawling up the stairs with my dogs afterwards in so much pain crying and my kids dont even flinch or say they are sorry. I printed this article in hopes that it may be an eye opener. Thank you.
How to Cope with Pain // Feb 26, 2009 at 2:12 pm
Valerie, I hope the article helps. 2 other suggestions would be: 1) work with a pain management doctor, so you’re not waking up every hour. 2) Get into family therapy – or at least therapy for yourself – so your family situation can be improved. And I hope, if not your family, then at least you have some other support for what you’re going through.
Good luck!
Valerie // Feb 26, 2009 at 9:30 pm
Hi There, thank you so very much for responding to my comments and your support. Yes, I have been undering a doctors care for 15+ years and my physical condition is getting worse. I am currently under the care of a pain management center and am currently going to aqua therapy to avoid or delay the need for surgery. I have a friend that has also has serious back problems and has had several back surgeries. This article has been shared with her. Regards.
patti // Feb 28, 2009 at 8:23 am
Hi Valerie
Time to take care of yourself.The kids treat you like that because you allow it.Time for them to fend for themself. Take care of you only.Now that you are out of work ,it is time to tke care of you back ,so you can feel better.
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