7/30/11

Letter to People without Chronic Pain-(applies equally to chronic illness)



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

20 comments:

Anonymous said...

You have put words to many of my feelings. Know that you are not the only one dealing with coping. I have Psoriatic arthritis. I also was told I have Fibro too. I am still trying to work. I have not went back to get my masters degree because of the pain.I was a backpacker and hiker for many years. I can not even go camping without modifications. Thank you for putting words to the feelings.

Leslie Einhaus said...

This is excellent. I am thrilled to have this script to guide me as try to communicate with others. It hits all areas of concern and some I didn't even know I had. It comes across as informative, showing the reader in a gentle non-accusatory way how he/she wants to be treated. I think it is a great starting point for chronically ill patients. So many times it needs to be said but the exact words are not there or you may be a touch frustrated or angry and the message doesn't come across as well as intended. --Leslie

Anonymous said...

This says so well the frustration I feel each day since I had my back surgery and have been left with continuous pain, that Dr's have assumed is now ADDICTION. I am so angry that I have been robbed of my life and doubted as to how much pain I now life with---just because pain can't be seen- doesn't mean it isn't real!

msyrod said...

I am in so much pain today, and I felt that I was being inpatient with everyone... When I read this, it brought tears to my eyes because of how much I could relate & wished others could understand me.

Anonymous said...

This strongly applies also to serious debilitating fatigue where you are very exhausted, achy, and feel like you have lead in your legs. This can be just as debilitating as pain ( which I get periodically), fogginess, dizziness

Mon_Cherie said...

I have had fibro for over 20 years-yeah, even before "they" didn't know what it was. Years later, they finally think it was from a horrible case of mono I had when I was in high school. In truth, I never felt "normal" after that. Everything from "in your head" to thyroid to MS is what I was told it was.
Like many of you, I've taken medication after medication to have horrible side effects and always felt like a pin cushion or guniea pig.
I've lost alot of people from my life due to this. In retrosepct now, I am glad I did-they either couldn't, wouldn't or didn't want to deal with learning with me how to deal.
Sadly, most of the hurt came from family...yeah, I lost them too. The daily defending myself took it's toll and it was easier to just move away-then I didn't have to come to the family functions-I lived too far.
Thank you for posting this.
The one person that really understood about how I feel, due mostly to the fact that she loved me unconditionally, was my Grandma and she left me a year ago, May.
I am formulating a letter to my family after all these years, and this letter and points will help alot.
I pray daily for ALL us sufferers-know that...and if you need a friend that speaks your language, I am here. God puts people in our paths for a reason. That being said I am so grateful for the Internet and facebook, where I have found "family", people to understand.
There's so much more I could write, but you've listened thus far-thank you.
I have a blog-there will be alot more of this and input from others on this issue-come & visit! Let me know you came from here...
I have been blessed with a very special man-that after years that we were together, had an accident and now suffers his own chronic pain. God knows what He's doing-we don't, but take comfort in the fact that yes, HE does.
Come & find me. I am on FB, Twitter, Pinterest and love to email/penpal. Let me know-I will comment back.

transoumom said...

Thank you so much for this. I am going to suggest my husband take your list to his boss and co-workers when he returns from his last crippling bout with chronic lower back pain. Just because he works does not mean is isn't in pain every single day of his life.

Kimberlie Wehrman said...

thank you soooo much for putting into words exactly what we/I am going through ... my Mom has fibromyalgia, my Mother-in-law has rsd, & I have ms ... all of us have been struggling for years with chronic pain & having no way to explain what we were going through :-( thanks for providing this wonderful explanation of our struggles ;-)

Karen Stubbs said...

Thank you. Have fibro and you have captured my experience perfectly. Only been 2 years, my life has come to a screeching halt. Bless all who suffer and our loved ones who understand.

Anonymous said...

I have had rheumatoid arthritis and fibro since 1979. Doctors told me it was in my head. took over a year to diagnose.The hardest thing I had to face was people thinking I was lazy and making my children believe that. putting on a happy face all the time is sooooo hard.My daughter was diagnosed at age 37 the same age as I was. She now understands but I hurt yo know that I passed it on to her.She does not have the same kind but still will need to learn to live with the pain every day and look after her three small children. I am still in pain every day even though I have a new knee and a new hip.The Fibro kicks in all day every day and it makes you short with people you love.I have a great husband who is now retired and he does my floors and cooks all my meals.As you can see I am spoiled now but it has been so hard to handle over the years. All I can say is keep your chin up and a smile on your face. This is a good way to keep mr depression from getting a hold on because when it does its a real bummer. KEEP THE FAITH AND KEEP SAYING ALL THE PRAYING GOING It does help

Charles D. Sutherland said...

This is very informative, but it has placed a huge wedge in the relationship between my mother and I. 16 years ago I began asking my mother to seek help for another chronic illness. She was a chronic liar and often imagined things that were not real. Most recently she has been contracting any ailment that she can find on webMD. This letter was sent to me, by her, today and it just feels like this another way for her to excuse her financial, health, and familial shortcomings. Do the supporters of this condition also have any information on eliminating the possibilities that a person has chronic pain?

Anonymous said...

So so true pity people couldn't walk a day in our shoes maybe they might understand,most people don't acknowledge what they can't see

Tim Weldon said...

I've suffered from chronic pain for over 15 years now. Since that time, I've lost my job, my friends, my family, my financial freedom, my vheicle, and RESPECT from others and for myself. I've been called faker, drug seeker, accused of potentially selling my pain meds. and even been told my pain is all in my head. Now, I am on disability and am reduced to poverty. My phone almost never rings and it can be days before I actually speak to another human being. I'm a nobody, plain and simple. I watch cars go by and wonder sometimes what their lives are like. A job, a house, nice car, kids, grandkids, brother and sisters who get together on every occassion....things I'll never have.

Nobody wants to know, nobody wants to hear, nobody wants to look. My days mostly consist of merely surviving. This is what crhonic pain has done to me.

Anonymous said...

Thank you for this. I have fibromyalgia not sure for how long because I have always suffered from depression and pain. But the last five years or so it has slowly stolen my life. I have nothing. No home or car of my own. No job for two years so no money and no family support. I take care of the house were I stay as best as I can. I help with the kids as best as I can. But still I feel like a burden. I don't have any one to take me to the Dr. or to get my medicine. I have no money for the bus and if I did I would probably end up lost. I can't sleep, I can't see, I hurt so bad I want to scream. I foget things. I wait until everyone is asleep and I just cry. I feel so alone.

Erin's h said...

Wow! I cannot believe how everyone has just abandoned you two! You don't even have an acquaintance
That would be willing to drive you to the doctor? What kind of house are you staying at where no one will help you?
Is this family, or do you work for them, or rent a room from them? Just curious, depending on where you live
You can call the local hospital or even your Dr.'s office, and tell them you obviously can't drive, you don't
Have any money for the bus, are there any volunteer programs set up to give rides to people like me
Who desperately need to be seen and stay on their medication. Since you said you have no money, look
To see if you qualify for any government programs that can help you with the cost of your medical care. Start
With Federal programs, then look into state, county, city, etc. there's got to be something out there that you
Will benefit from, even if it's just a local chronic illness group that gets together and vents- at least you'll
Feel more supported! If I find anything, I'll post it in here!��

Erin's h said...

So sorry you're going through this! I have Fibro, Myofascial Pain Syndrome, Intercystitial Cystitis, Tinnitis or Lock Jaw,
and Adrenal Insufficiency among other disorders but stopped here because all of these are ink
Ilv. Br-related specifically
to the Fibromyalgia. I bring this up because the reason I wrote the previous post is because I know first hand how hard it
Is to get through this pain and illnesses when you have support. When you don't, it's just hurrendous! There was a
period of time where my husband was either burned out or not believing me anymore and my family was kinda like ok now
This is enough, let's get you well. They took the attitude like I needed to get better because they just couldn't deal with it
Anymore. I was just like really? How the heck do you think I feel? I'm the one who actually feels the pain NOT you! And
because of my adrenal insufficiency, I wasn't producing enough adrenaline period. But when I'd get stressed, I didn't produce
Extra like you're supposed to, in order to choose the fight or flight response. So every time I got stressed, I'd end up with some
Crazy fever or illness and end up in the hospital for at least 3-4 days. That happened 4 times. I finally said whoever stresses
Me out next is paying for my hospital bill! Now for some reason they've completely changed their tune. Probably because they
Saw how much I suffered just going through all tests at the hospital while being in extreme pain! That was
The worst! I don't wish that on anyone! I'll keep you all in my prayers
God bless us, every ONE-Tiny Tim
I thought it was appropriate for the holiday season. ;)

Priscilla Hughes said...

From one chronic pain sufferer to another, I am so sorry that this has happened to you. I have difficulty putting into words what I want to say so just know I understand how you feel.

Ann Draycott said...

Thank you for your bravery and sharing, you write beautifully about how it feels to live with a chronic illness. I was diagnosed with fibromyalgia in 2008 having all the typical symptoms. Then in 2012 (many doctors and consultants later) I was diagnosed with Systemic Mastocytosis. My partner and I were keen to understand the disease and to share our findings with others, so we built a website dedicated to helping others learn and understand the condition www.meandmymastcells.com I am posting this as I have come to realise that the symptoms of both fibromyalgia and Mastocytosis are similar if not the same, and getting a diagnosis is vital in overcoming the anxiety caused by not knowing what ails you. Please know we offer the information completely free for the help and support of others.

Anonymous said...

Hi. I'm 36 yrs old women, with fm, me, eds, immune problems and many more, some since childhood others I've had to fight to get diagnosed for over ten years by myself. My wife left me after 8 years couple months ago cos couldn't cope with my health any longer. My family aren't much better, only seeing me if I end up in hospital. They don't believe me or think it's dramatic, they moan if I talk about it or ask for help as they are too happy in there own lives to have time for it. And they have made this very clear over the past few months, as I'm now living alone, can't do cleaning, cooking I've lost a stone in a month, showering if I'm lucky once a week, but also due to be homeless in a month. The council won't help as I'm not worthy it would seem, disabled and homeless I don't get it but that's England for you! I've tried every hard to explain it to them, show them stuff about my health but they just don't want to know. So I'm left alone. I help them out whenever I can and ask them how they are doing but never get the same back. I've always been a fighter but this year has broken me I don't even want to live anymore. I feel like we look up about our health and read up but our family and friends can't do the same for so many of us. I want to thank everyone for making me feel that I'm not alone but I'm also sorry that you are pain and fighting every day just to make it thru. K

Anonymous said...

Hi. Thank you to everyone that has written on here so helpful. I'm a 36yrs old women. I've fm, me, eds and immune problems and much more.some since childhood and I spent years getting the answers which I had to fight for myself without help from family or friends. I wife left me a couple of months ago due to not being able to cope with my health anymore, my family aren't much better only really seeing me if I end up in hospital. They don't like me talking about my health, they don't like seeing it or helping out with it. I can't do much at all, cleaning, showering more than once a week if I'm lucky and no cooking which is why I've lost a stone in a month. I'm also due to be homeless in a month's time. My family knowing all this still aren't any where to be seen, I've tried every way possible way to talk to them and explain even saying just help this one year, they don't have the time I get told, my mum doesn't even work! I feel as if I don't want to live anymore. We all read up about our health and what we can do I just don't get why our friends and family aren't do the same I've showed my family stuff but they look at me like I'm wasting there time, they either don't believe or too dramatic! They council won't help as in not worthy enough disabled and homeless what more do I need to be! But that's England for you! I hate to say at least I'm not alone but I would hate anyone else living like this its not fair on any of us. We fight every single day just to get thru.I try to keep my faith but it's up hard right now. I wanted you to all know that I am supporting you from far and think of others like myself or worse every day just to stay alive. K