I just wrote a message to one of our members and thought that I would share part of its contents with all of you. As many of you know, explaining this disease to others (spouses, significant others, our children, family members, and friends) is difficult at best. Here is a “script” that I wrote out that explains this disease and its effects on us and our lives in personal terms that they may understand much better and more realistically.
I will NEVER understand why people do not understand the two words strung together: chronic pancreatitis. Sometimes we need to “educate” our loved ones even on something as simple as two words. Here is how I would do it as I have been thinking about this for quite a while and I will also post this on the general notice board.
This is how I would tell it and I am addressing this person directly as if I am doing this in real life. The person is sitting in front of me and I have asked that person to hear this tale:
First of all, do you remember that first pancreas attack I had back on July 16, 1994? Remember how painful it was and how worried you were when you saw how painful that was and how I had to stay in the hospital for 10 months? Remember how scared we were that I might even die from something that we knew, and still seem to know, so little about? That surgery that I had, called a “pancreatiduodenectomy” and how long it took and how the whole family was there waiting for the word of “success” or "I am so sorry . . . "? I still have part of that same pancreas today and, unfortunately, it is still as sick as it was back then and, sometimes, it gets even sicker than it was back then. The pains that I have to this day are at least as bad or even worse than they were on that tragic day that I had that attack that almost killed me and the hospitalization that I had to have as a result. You see, I know you know this and I am not trying to insult your intelligence at all, I now have “chronic pancreatitis.” First, as I already told you, I still have pancreatitis and it is as bad and sometimes worse than the first attack. Now, they have added the word “chronic” to it, meaning that I still have pancreatits and the pain and that it is going to last a very long time–possibly until the day I die. So, “chronic” means that I have and will have it forever and pancreatitis added to it means that I will suffer that pain just as long. I want you to think of it this way. Hold your arm straight out from your side and hold it there. How long do you think that you can do that? Think about having to hold that arm out there 24 hours a day for as long as you live. You will feel pain after less than an hour and more and more pain as time goes by. If you held it out there forever, you would not only feel great pain all the time but the pain will also make you very, very tired because having pain all of the time wears down the body and it is hard work to deal with pain all of the time. You will become fatigued and worn out over time and you really will not want to do very much because just dealing with the pain is too much to bear. Now, add to that constant nausea, possibly diarrhea, and not being able to eat all the wonderful food that you are used to. If you can grasp just 10 percent of that state of being, you will certainly know just a bit of what I am going through all the time. Now, you are lucky because you can stop holding that arm out all of the time as you have the choice as to when you want to quit. I do not have that choice at all and I never will. It is also known that, even if I had the entire pancreas removed, there is NO guarantee that the pain will cease at all! So, to expect me to “get better” or to “feel better” is something that this disease will not allow me to do, ever! I hope that this helps you to understand more of what I go through every day without any real relief or way to escape. I love you very much and, if I could get better so that I could enjoy more of the day to day things that are so easy for you to enjoy, I would, but I can’t do it and my doctors have no way to make this go away.
Well I hope that this helps all of you a bit. We all really need to have this talk with others. I know that my son has a hard time with this as well, thinking that it was like a broken arm or something that was not only visible but also reparable. He is getting better in his understanding lately and is more compassionate and understanding of why I never get better and that I am not “freeloading or lazy” as I have Sara and others help me so much.
With much love and care,
Anyse