Someone shared this with me a while back and it says what maybe I try to put into words unsuccessfully each and every day. Though I tweaked it a bit..it pretty much sums up what I have been dealing with for the last five years.
Letter to people without chronic pain or unknown illness
Having chronic pain, chronic or unknown illness 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 them and their affects, and of those that think they know, many are actually misinformed. They can not see anything visible , therefore it must not exist.
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 or are here all the time, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about my family, my friends, life and most of the time, I’d like to hear you talk about yours too.
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. Riding for 30 minutes today does not mean I can do it for an hour or at all tomorrow. 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 is 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 unknown illness. You never know what is going to happen next. What is going to hurt or cause you pain.
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 or get angry with me. 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 try and 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 do try not being miserable all the time. 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 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? Do you really think this is the life I would choose for myself? Do you really think that I enjoy this being my life, my normal? By the way what is normal I no longer know.
Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain or unknown illness 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 and unknown illness may cause secondary depression (wouldn’t you get depressed and down if you were sick constantly for months or years and had no idea why?), but it is not created by depression or anxiety.
Please understand that if I have to sit down, lie down, stay in bed, 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 in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If I seem touchy, its probably because I am. It’s not how I try to be or want to be. As a matter of fact, I would like very much 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 all— 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 not be able to do any of it somedays. I may need you to take me to the doctor or to the store. You are my only link to normalcy. You can help me to keep in touch with the parts of my life that I miss and so wish I could have back one day. But please do not be upset or angry, because you have not walked in my shoes. And I can promise you these shoes are worn and beaten down now.
In the meantime, I will keep searching for a reason, a cause so then and only then, I can look for solutions and ways to hopefully be well once again. I can only hope that one day soon I can find some answers.
