Do you know someone who lives with chronic pain or illness?

Do you know someone who lives with chronic pain or illness?

 I recently read a really great book called "She'll never make it through the night - an extraordinary story of faith, hope, and the power of prayer", By D Hedegard. Inside it says:

Even at times when the Holy Ghost is moving and miracles are happening, godly men are not immune from sickness. We serve a God who heals. But we also serve a God who—as Elisha experienced, as Hezekiah experienced, as Paul makes reference to—sometimes uses sickness for his glory.

This book was both heartbreaking and heartwarming and most surely an inspiration and challenge to all who read it. I heartily recommend it. But now I'm reading another very good, challenging and inspirational book called, "Wednesdays were pretty normal: A boy, cancer, and god." By M. Kelley, which I'd also recommend.

But they're not really what this post is all about. They just gave me the idea. Both authors show how their lives change and as I was just reading about how people you're close to seem to drift away after awhile, I realized that I wanted to talk to you guys about that. All of the members here in the pain forum have experienced that very same thing when they became sick or disabled. People they were close to for years either slowly or suddenly, just stopped calling or coming by, and no longer responded to messages. I experienced it as well.

Usually when we go through that, we're pretty new to the whole disabled; pain; illness thing ourselves and don't know what to expect or what's going to happen to us. No one warns us that our friends won't be our friends for long, so we have that hurt to bear on top of our pain and illness. The stories I've heard about this are heartbreaking to say the least.

As this author and others point out though, it's not necessarily the "friends" fault. Most folks simply don't know how to deal with or relate to people who are in constant pain, ill, and disabled. Especially not when that person is someone they knew as an active, healthy, go getter. And believe it or not, statistics show that most of us who are now disabled were very active people before the accident and/or disease put a stop to it.

As I'm sure you're aware, we have a private forum here for those who live with pain. It's our hideaway, where we can talk without having to be concerned about whether or not others will understand, or whether or not what we say will frighten someone or make them uncomfortable. Out here, on the main board, we may say something like, we have a doctors appointment, or a check up etc. In there though we can talk about the appointment - why we're going, how bad the pain is now, our fears, our hopes, whether the doctor is good or not, what we like and what we don't.

I've always felt torn about it being a private forum though. We need the privacy in some ways, but in other ways, we need it to be out in the open, because more then anything else, we need other people, people who still have what we call, "normal" lives, to understand us. But when we do talk about it a little out in the open, we can tell that many people are just plain uncomfortable with it. We don't blame them for that. We were the same way ourselves once. After all, what do you say to someone that's in constant pain every single day???? How do you deal with it?

So tonight I thought, well, why not try and explain to other people what we'd like them to understand? That it's OK to be uncomfortable, but don't try to hide it - say so! Tell us you don't know what to say, because that way we can reply and share our hearts with you.

There are many very good articles written by people like me who live with pain about what life is like for us. If you know anyone online who lives with chronic pain or illness, then you most likely have heard an expression about "the spoon theory" or "spoonies". It's a way a lady made up to explain to a friend what her life was like now, and it resonates with all of us.

To put it simply, she explained that it's as though every person with chronic pain or illness is given 5 spoons at the start of each new day, and they must get through the entire day using only those spoons because they can't get anymore. Everything we do though can cost us a spoon. It depends on how our body is reacting that day, and how well we slept that night. So, on a good day, if we get out of bed and get dressed, that costs us 1 spoon, so now we only have 4 left for the entire day. But, on a bad day, just getting out of bed may use up one of our spoons, and getting dressed a second one, leaving us with only 3 left for the rest of the day. And so it goes through the whole day for us. What we used to do without even thinking about it, we now have to think about and decide if it's worth doing or not and if it is, then how many spoons will we lose doing it? If you've never read it, I really hope you will because it will really help you understand what people like us deal with on a day to day basis.

You can read the story here in English and they also have it translated into Spanish, French and Hebrew. The link for those is at the end.
http://www.butyoudontlooksick.com/wp...-spoon-theory/

Another good article is called Understanding Chronic Pain
An open letter to anyone who has a chronic pain patient in his or her life. and can be read here:
http://www.healthcentral.com/chronic...-287065-5.html

Finally, there's one that many have already read here:
The Challenge Of Living With Chronic Pain

Please know though that the most important thing to us is that you understand that we're not looking for sympathy or pity. What we want more then anything in the world, is simply that you understand us, and the only way that can happen is if you're willing to talk about it with us Yes, it will be uncomfortable at first. Believe it or not, it's uncomfortable for us too. We don't want to scare you or upset you so we're unsure of just how much to say, what parts we should talk about and what parts we shouldn't, etc. So you see, we have fears too.

Mostly, we just want you to love us and accept us just the way we are, for who we are now. This whole dialog thing may scare some of us even more then it scares you. That's why the author of the book I told you about said it wasn't always totally the other persons fault when they stopped calling. Sometimes we're the ones to clam up. If we do, just reassure us that it's ok, you're still going to love us. Don't worry if we cry. Just hand us a tissue or three or four .

Most of us with chronic conditions, spend our time around other people both online and in "real life", trying to pretend to the best of our ability, without actually lying, that we're normal and have normal daily lives. That's why we have the private forum here on FH, so that the masks can come off and we can be real for a little while. We don't want to be different. So for us, we're learning to accept our lives the way they are and deal with things the way they are now.

Often, one of the hardest lessons for us to learn, is to accept help from others and even harder is to actually ask for that help. Most of us are used to being the ones that helped others and we don't like being on the other end of the stick. Even after almost 14 years, this is still very hard for me.

Even if you don't know anyone that's living with chronic pain or illness, I still hope you'll read those articles, because sooner or later you'll meet someone like that and then at least you'll be a bit ahead of the game.

If you do know someone who deals with chronic pain or illness, then please, tell them you want to understand what they're dealing with every day. Tell them you're aware that it might be awkward at first for both of you, but that the Lord told us to bear each others burdens and you can't do that if you don't know what the burden really is. Make a deal with them that when the conversation starts to get to heavy, or overwhelm either of you, that you both will agree to simply say so and end the talk until the next time you're together. And be sure to set a date when you can be together again soon!

Don't be afraid to tell us if we start to get to technical too. Because of our condition, many of us have done a great deal of research and learned all we can about our condition, so we can get carried away and forget that you may not be familiar with a lot of the terms that are now second nature to us. And don't feel badly for not knowing those terms, because we didn't know them either until we had to learn them out of self defense.

Promise each other that you'll both be honest about your feelings each day and that you won't try to hide the truth from each other or even yourselves. Hold each other accountable, pray with each other and always invite the Lord into your conversations. I know that helping each other and protecting your friendship this way will please the Lord too, for He tells us that what we do for each other, we do for Him as well.

I can promise you one other thing as well. The awkwardness you may feel at first when you begin discussing this with each other, will quickly pass. Not only will it pass, but no matter how close you were before, you will find you're even closer to each other now. Finally, please realize that this "conversation" won't continue forever. Once you have a good understanding of what your friend is really going through every day, then it won't be needed anymore. At that point you'll find that you both now have a real friend that you can talk to about absolutely anything. One you can laugh with and cry with, without being uncomfortable.

May God bless those who are willing to stretch themselves beyond their comfort zone for the sake of a friend in pain.

PS: There is something you could easily do to help many of us when you post on line. Many of us also have trouble with our eye sight. So it helps a great deal when people make their posts bold. We can make the text larger on our computers ourselves (those of us who have figured out how to do that) but we can't make it darker. So if you're interested in helping us out, that would be one quick and easy way you could do so.