A Letter to Normals(From a Chronic Pain Patient)
Having chronic pain means many changes and a lot of them areinvisible. Unlike having Cancer or being hurt in an accident, most people do notunderstand even a little about Chronic pain and its effects, and of those that think theyknow, many are actually misinformed. In the spirit of informing those who wish to understand…
… These are the things that I would like you to understandabout me before you judge me…
Please understand that being sick doesn’t mean I’m not stilla 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’mstill me stuck inside this body.
I still worry about school, my family, my friends, and mostof the time – Id 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 beensick for years. I can’t be miserable all the time. In fact, I work hard at notbeing miserable. So, if you’re talking to me and I sound happy, it means I’mhappy. That all. It doesn’t mean that I’m not in a lot of pain, or extremelytired, or that I’m getting better, or any of those things. Please don’t say,oh, your sounding better! Or “But you look so healthy! ¨ I am merelycoping. I am sounding happy and trying to look normal. If you want to commenton that, you’re welcome.
Please understand that being able to stand up for tenminutes doesn’t necessarily mean that I can stand up for twenty minutes, or anhour. Just because I managed to stand up for thirty minutes yesterday doesn’tmean 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 likea 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 hardestand most frustrating components of chronic pain.
(Please repeat the above paragraph substituting, sitting,walking, thinking, concentrating, being sociable and so on … it applies toeverything. That’s what chronic pain does to you.)
Please understand that chronic pain is variable. Its quitepossible (for many, its common) that one day I am able to walk to the park andback, while the next day Ill have trouble getting to the next room. Please don’tattack 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 todo something, then ask if I can. In a similar vein, I may need to cancel aprevious commitment at the last minute. If this happens, please do not take itpersonally. If you are able, please try to always remember how very lucky youare to be physically able to do all of the things that you can do.
Please understand that getting out and doing things does notmake me feel better, and can often make me seriously worse. You don’t know whatI go through or how I suffer in my own private time.
Telling me that I need to exercise, or do some things to getmy mind off of it¨ may frustrate me to tears, and is not correct if I was capableof 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 amsupposed to do. Another statement that hurts is, you just need to push yourselfmore, try harder… Obviously, chronic pain can deal with the whole body, or belocalized to specific areas. Sometimes participating in a single activity for ashort or a long period of time can cause more damage and physical pain than youcould ever imagine. Not to mention the recovery time, this can be intense. Youcan’t always read it on my face or in my body language. Also, chronic pain maycause secondary depression (wouldn’t you get depressed and down if you werehurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down/liedown/stay in bed/or take these pills now, that probably means that I do have to do it rightnow – it cant be put off or forgotten just because I’m somewhere, or am right in themiddle 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’tappreciate the thought, and it’s not because I don’t want to get well. Lordknows that isn’t true.
In all likelihood, if you’ve heard of it or tried it, sohave I. In some cases, I have been made sicker, not better. This can involve side effects orallergic reactions. It also includes failure, which in and of itself can make me feeleven lower. If there were something that cured, or even helped people with myform of chronic pain, then wed 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’sdefinitely not for lack of trying. If, after reading this, you still feel theneed to suggest a cure, then so be it. I may take what you said and discuss itwith my doctor.
If I seem touchy, it is probably because I am. It’s not howI try to be. As a matter Of fact, I try very hard to be normal. I hope you will tryto understand. I have been, and am still, going through a lot. Chronic pain is hard foryou to understand unless you have had it. It wreaks havoc on the body and themind. It is exhausting and exasperating.
Almost all the time, I know that I am doing my best to copewith this, and live my life to the best of my ability. I ask you to bear withme, and accept me as I am. I know that you cannot literally understand mysituation unless you have been in my shoes, but as much as is possible, I amasking you to try to be understanding in general.
In many ways I depend on you – people who are not sick. Ineed you to visit me when I am too sick to go out… Sometimes I need you helpme 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 withthe parts of life that I miss and fully intend to undertake again, just as soonas I am able.
I know that I asked a lot from you, and I do thank you forlistening. It really does mean a lot.