Do any of you experience apathy from your family? Mine has the mind-set of get over it, everyone has something. The difference is mine is crippling me and am single w/two wonderful young boys. And I'm worried and alone with this. How do you deal with family and friends that don't understand? I'm feeling so blue.I come here. Please come here- we are here for you. We understand you.
It is really hard for people who don't have our disease to understand that even the simplist things can cause great pain. the common thought is to "get over it". *at least that has been my experience*. I'm in the medical field and still get that nonsense and my people should *know* better.
We are a great support and will be there for you. Come to us, we will help you along the way.
PhatsHI Teenee, see if you can hire a video from your Gp or your Rd or library, or if you belong to the arthritis foundation they have great stuff for the "outsider" (thats what I call them, those that don't have it or understand it) this can often educate them as at the end of the day, it is all about education and understanding, I think if most people knew the ins and outs of this dreaded disease they would all stop to give a helping hand or a kind word. Best of luck from Janie.
This letter is posted on another forum that I go to - the Arthritis Foundation - Rheumatoid - RA Connect or something like that - search around in the Arthritis Foundation website. I wish I had had the letter last year when I first got RA. My sister had a hard time dealing with me and did many of the exact things mentioned in the letter. I'd recommend you give a copy to every member of your family and to any friends who also are having a hard time with your diagnosis. Best of luck to you. I sincerely hope this helps 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 effects, and of those who think they know, many are acutally 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, 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 every day. 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 sustituting, "sitting", "walking", "thinking", "concentrating", "being social" and so on....it applies to everything. 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 "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 seomthing 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 that 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 I have to do it right now - it can't be put off or forgetten 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 a worldwide network (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 of 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 your help 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 asked a lot from you and I do thank you for listening, it really does mean a lot.
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Friends are just angels who have forgotten how to fly
Edited: 2/1/2009 by chris 2
Post #4160356