As a loved one, if you sometimes feel frustrated or overwhelmed, do not kick yourself over it. That is normal behavior. You should be frustrated. You should feel some anger. You should feel a bit overwhelmed. But remember that you should channel all of this anger towards the disease, and not the patient. It isn't your loved one that is causing you to feel all of these emotions; it is the dreaded illness that is burning inside of them that is causing you to feel these emotions. In just about every other way, the person who is sick has not changed. They didn't cause the illness to attack them, and they sure as heck don't want the illness to continue to eat at them. Just from talking to my wife, I know how bad she feels about the illness and how it impacts me, her mother, and anybody else that is close to her.
I like to drive home this point in many of my blog posts: Think about your everyday activities. Think about how you might like to play sports, or walk the dogs, or drive to see a friend. Or, to really drive the point home when it comes to this particular illness, how you like to go to a restaurant to eat your favorite meal. Would you ever, in a million years, want to give up these activities? When you see a person in a wheelchair, you feel instant empathy for that person, and rightfully so. It is highly likely that the person in that wheelchair is unable to walk around very much on their own, if they can walk at all. It is a very visual thing - you see the person in the wheelchair, and you instantly know they have trouble walking. When it comes to someone with Gastroparesis, not much is visible. Many people with the disease look healthy - some of them may even appear HEALTHIER than you previously thought they were. OUTWARD appearance has nothing to do with INWARD torture when it comes to this condition. People with Gastroparesis don't wake up one day and decide they no longer enjoy the things they loved the day before they came down with this disease. Most of them would give up just about anything just to enjoy the life they once lived.
This is not to say that, as a loved one, you need to continuously walk on eggshells. That isn't healthy for you, isn't healthy for the sufferer, and simply does not work in the long run. But you do have to read the mood as well. You need to figure out when to be the cheerleader, and when to be the amateur psychologist. Often, you have to try to be both.
There are "good" days and bad days with this condition - and that can vary based on the person and how severe their condition is. I always try to tell people that reading everything on the Internet can give you a good picture of the disease, but you can't cherry pick what fits your own personal opinion. For example, if someone in a blog message says "I can do anything with Gastroparesis!", that doesn't validate your belief that your loved one can do anything. Just like if someone says "I don't know how I can live another day with this", it doesn't necessarily mean that your loved one will feel the same way. The disease manifests in many different ways and attacks people differently. My wife had a (relatively) good day last Saturday. Now, here we are 6 days later, and she is very ill again. How does that happen? We don't know. Nobody really knows. But it just drives home the point that this disease knows no boundaries.
As a loved one, just try to have some patience - and always believe that some day, your loved one will be cured or the disease will just go away (it does happen). Until that day comes, continue to support your loved one. It can be a long journey - it can be a short one - but it is one you have to take together. Nothing will work otherwise.
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