I came to address this topic in a 'friend of a friend' kind of way. It seems appropriate, during Multiple Sclerosis Awareness Month, to write something about how family relationships can be affected, both positively and negatively, by MS.
The family in question felt that 'Sis' had been dealt a lousy hand. Since her diagnosis of MS, they were ever-mindful not to increase her burdens. Told that stress could potentially aggravate the MS, they held back discussing important family issues. They walked on eggshells around Sis, choosing to hold their tongues rather than confront her with problems which needed attention. In the meantime, their own stress levels were building.
My first thought was, “What a caring family.” And they are. They quite naturally want to protect one of their own, one who must live with a chronic and debilitating illness. Their good intentions are born of their deep love for Sis.
However, as a woman living with MS, I decided to turn the tables and look at this from another perspective. I put myself in Sis's place and pretended I had overheard this conversation within my own family.
I could easily understand where they are coming from. I'd probably get a little choked up and would be sincerely grateful to have the loving support of my family. I would also be stunned and a little upset.
The ensuing conversation with them would go something like this:
"I want you all to know how much I appreciate your support and love. I don't know how I could possibly get by without you. You are my strength. But MS is coming between us.
I ask that you stop trying to protect me from life. What MS has taken from me physically, I can't change. However, I will not allow it to take me out of the game!
I will participate in life...in every way possible. I'm an adult with adult problems. I live on planet earth, were stress is a reality. I will learn how to temper that stress as much as I can. I will take whatever problems that come my way and work on them to the best of my ability.
I will take your help when offered, and believe me, I will ask you for help when I need it. But please don't keep things from me 'for my own good.' Don't hide your feelings from me. Talk to me as you would any adult. It's okay to disagree with me. It's okay to offer suggestions and opinions. I will do the same. It's okay to cry with me as well as laugh. I won't relapse if you get angry. It is not good for any of us to withdraw. We'll all benefit from honest, open communication.
If at first I don't take it well, give me time. I'll give you some time, too. I know that you've each had to make sacrifices and adjustments. We're all still learning how to navigate around this mountain. Rather than let MS come between us, let's face it together."
Published On: March 17, 2008