As a patient, it’s easy to get totally self absorbed and to forget how MS is effecting those around you – especially your caregiver, family and friends. I went through all of the normal stages of crisis – denial, anger, guilt, etc. While there have been some pretty low times, my wife, kids and friends always seemed to be there to pull me out of my funk. What I did not realize was the toll it was taking on them. As a patient, you know what MS is doing to you every day. The loss of functionality is easy to feel. What is hard is to envision as a patient is what it must be like to see your husband, father, brother or friend having these problems. You end to get so wrapped up in yourself that you forget how much they must be hurting too.
It’s embarrassing to say but it took several years into having this disease to begin to realize the impact that it could be having on others. Sure, I would apologize endlessly when I needed to have someone else help me do something. But that is not enough. What I needed to do was flip the situation around and think of how it would be for me to watch my spouse or “Daddy” suffering.
I thank God every day that I have my wife, kids and grandchildren around me to support and help. The things that my wife has had to do for me – well let me say that I know the marriage vows say “in sickness or in health” but these things were never part of the contract. Many couples break up when MS strikes. It all becomes too hard. While it has certainly strained our relationship, in many ways we have become closer as we have both battled this disease. Still, it breaks my heart to see her needing to do things around the house that I used to do. Simple things like taking the Christmas decorations down from the attic fall on her shoulders. Our kids provide us with tremendous help when we have “big” projects to do. However, they are now grown and have their own lives and responsibilities. So when day to day issues come up, they are usually hers to do. From an MS patient’s perspective, it’s easy to get absorbed by guilt at all of this. Again, what’s hard to see sometimes is what it’s like from the other side – seeing a loved one not able to do the things he or she used to do. I have not found an easy solution and get sucked back into the world of self absorption far too often. The only advice I can give as a patient is to keep trying to see it from the other side.