Communication is Key

As a loved one to someone who has a terrible disease, you may often try to downplay some of the stuff you are going through in your own life, to the point where you don't even communicate those feelings to your sick spouse.   After all, nothing you are going through compares to what they are going through.  They are lucky sometimes to get out of bed on their worst days, so how can you even think about complaining about your job, or the fact that it is raining, or that you can't get past a Candy Crush level?    Of course, I wouldn't probably recommend complaining too much about a game, but you get the point - everything in your mind seems trivial compared to the person who is sick.   You will get into your own mind that you can work everything out yourself, and move on without even your spouse noticing you were having a problem.

Here's the thing:  You have likely lived with your spouse for a long time - perhaps even years.  A small change in your behavior - even if you don't personally see it - is going to be noticed.    It is almost impossible to "fake" being OK, because your body is going to naturally do things that show that you really are not OK.

I say all of the above, while recognizing that in this instance, I don't practice what I preach.   That has always been the case; even before Colleen got sick.  I don't communicate my feelings very often, especially when the feelings are the not-so-good variety.    It is easy for me to express my love, my gratitude, and all of the finer points.   But put my back up against a wall, and I internalize it - at times, it would be easier to go into a jungle and lift up an elephant than it is to get anything out of me.   It is a part of who I am, and how I am built - is it healthy?  Not in the least bit.

Bottom line is that communicating with your loved one is a key for them to get through their disease as well - sometimes switching the focus from what they are dealing with to something you may be dealing with can actually make them feel a little better.   They can release all of their dreaded thoughts and concentrate more on what you are going through.   In the end, you have to try to get it out of your own mind (I never would say this is easy - because I can't do it myself) that your problems are trivial compared to your loved one's problems.    This is actually quite true, but you shouldn't simply minimize what you are going through in your own life in order to protect your loved one.

They will catch on.