Don't assume because I look well that I feel well. Looks can be very deceiving. Many days I look great, but I feel terrible.
Don't tell me that you know how I feel. No ones knows how anyone else feels. Two people with the same disease may feel totally different.We all have varying thresholds of pain, and pain cannot be measured.Don't tell me, “It could be worse.” Yes, it could be, but I do not need to be reminded.Don't decide what I am capable of doing. Allow me to decide what activities I can participate in. There may be times I make the wrong decision, and if I do, I will know it soon enough.Don't be upset that you cannot ease my problems. It won't do any good for both of us to be miserable.Don't ask me how I feel unless you really want to know. You may hear a lot more than you are prepared to listen to.Don't assume because I did a certain activity yesterday that I can do it today. I DO believe in God-given, supernatural healing. However, I am choosing to live with the reality of my condition, learning to accept my limitations and spreading Awareness WHILE I wait. I am not lacking in faith, nor am I having a pity-party. Do learn everything that you can about the disease. The more you know, the better equipped you will be to know what to expect. Do realize that I am angry and frustrated with the disease, not with you.Do let me know if you are able to help me when I ask. I will be grateful.Do offer me lots of hugs and encouragement. However, please recognize that hugs hurt, so be gentle.Don't take offense when something that I say comes out wrong. The words get all jumbled up in my head, and sometimes just do not come out right. Do give me the benefit of the doubt.Do understand why I cancel plans at the last minute. I never know from one day to the next how I will feel.
Do understand when I can not remember your name or what I planned to do. I want to remember, but sometimes I just can't.Do continue to invite me to all the activities. Just because I am not able to bike ride along with the gang, does not mean that I can't meet you for the picnic at the end of the trail. Please let ME decide.Do understand that sometimes it is so difficult... my 'wanter' and my 'rememberer' and my 'dooer' get all screwed up with my 'energizer' !* * * Thank you so much for reading this and for your understanding. I would hug you right now! * * *
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This letter was written and posted on the internet with no author revealed. I thought for those of us who suffer with chronic pain that I would pass it along for you.
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.
Do`s & don`ts when dealing with someone with an Invisible Illness
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