The loving support of our family is a great comfort to us when we are living with chronic illness. But the road to understanding can be a rough one. The most important thing to remember is that our family members do care, but their reactions can be confusing.
If our chronic illness began with a sudden, perhaps even life threatening, event it will have been quite a scare for everyone. At first family will gather around you and help in any way they can. But as time goes by they may not realize how weak we still are or how much pain we are dealing with. We need to know that they want us to get well so each time we seem cheerful or exhibit some energy they see this as a sign that we are better. The myth that modern medicine can cure anything adds to their difficulty in understanding our lingering illness. So when your parents visit and exclaim that you look just wonderful they are not discounting your illness. They are expressing their love for you and their hope that you are well again.
In the cases where chronic illness comes on slowly it can be even harder for you and your family. There is no one point in time when the illness begins. It may even take your doctor a long time to identify your condition. During that period when you just don't know why you feel so awful some family members will be sympathetic, but others may wonder if you have become a hypochondriac. Many of us try to keep up a cheerful front because we don't want to seem like a complainer. All this results in a confusing situation for us as we wonder if our family really cares. Again, it isn't a lack of caring on their part but their wanting you to be well and happy.
One of the most frustrating experiences for many of us occurs when we describe a symptom to someone. It might be about our pain or how our mind is muddled at times. They may well reply that they have experienced the same thing or that it is just a part of getting older. It takes persistence on our part to get them to understand that there is a difference between forgetting where they put the keys and our inability to pull up a common word like "stove" or "house". Getting lost in a strange city is not the same as getting lost two blocks from our own home. Annoying pain is just that, while pain that is so severe we can't concentrate on what we are doing is quite another thing. But this is hard to explain especially when the listener doesn't want us to be that confused or in that much pain.
Another factor in all this is that our family is used to us being a certain way. We may have been the one who took care of everyone else or the one who kept everyone's spirits up with our good cheer. Now we have changed. We can't do what we used to do and it's hard to put on a happy face all the time. They need to learn that we still love them just as much as ever even though we have changed. They have to get used to the fact that they must take over some of our old roles. Gradually they will begin to understand that when we leave them to go rest for a while we aren't deserting them but simply caring for our self.
The hardest thing about all of this is that it takes time and patience during the time when we are still struggling with adjusting to our chronic illness. Just remember that our family does love us and they too are having difficulty dealing with the changes our illness has brought.
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