I should have titled this A Year of Revelations, because it has taken most of the year since my diagnoses to tell my family about my MS. I have only, in the last two weeks, told my mother and sister. My children were told in a span of about 8 months. Two out of three of them were living far away from home until May of 2011. It didn’t seem appropriate to tell my then 14-year-old, without him having his siblings around to share the burden of knowing. What I really wanted was to spare everyone the burden of knowing. I felt as though my parents, both in their 70’s, would likely never need to know in their life time. I have lived my entire life trying very hard not to disappoint them. I knew this would be an unnecessary crushing blow to them and an unnecessary worry. If I ever were to progress to a more degenerative stage of this disease, it’s likely to be very far down the road after they both have passed.
It was decided that I would pretty much keep it a secret until at least the return of my family. I did tell a handful of close friends partly because it’s easier to tell friends than family and partly because I guess I was practicing “the conversation.” I was sure to tell them that it wasn’t public knowledge, I didn’t want my family to hear it second-hand. It was always very awkward to bring it up. When you start the conversation with “I’ve been diagnosed” they brace themselves for the worst, thinking you are surely going to reveal that you have terminal cancer and they seem relieved that it is only MS.
My children arrived home in May and I planned to have a family meeting. Before I had a chance to do this, two things occurred. One was that my daughter, my oldest, found my stash of drugs in the refrigerator while reorganizing it late one night. She confronted my husband after googling Copaxone. The two of them had the conversation I had planned to have with everyone. I wish he would have had the opportunity to talk to all of them without me. I was actually hoping my daughter, who isn’t exactly great at keeping secrets, would just tell the boys and spare me the difficult task. The second thing to happen that May was my son’s very close friend died in a car wreck. He was already in a less than optimal place mentally. Having just had a stressful semester away at school (broken hand/surgery, dropped classes), he was preparing to transfer closer to home and wasn’t particularly happy about it. After his friend died, I certainly didn’t want to add anymore distress to his life. He was already spiraling towards a deep depression and so I put off telling and focused on helping him heal. This resulted in also not sharing the news with my youngest son. I felt that the oldest to youngest hierarchy of disclosure needed to be maintained. Finally in August, I told my older son. He was concerned, but I breezed through my spiel about awesome medication and that I wasn’t symptomatic and it seemed to ease his mind. I was, however sure to tell him that stress plays a major role in relapses. Anything to try to snap him into being a less stressful component in my life. It would be months before I got the nerve to tell my youngest.
We eventually had an afternoon together Christmas shopping in early December and I brought it up on the way home. He was quiet, but then again he is always quiet. He just asked one question, “what’s going to happen?” I told him that nothing was going to happen because they caught it early and I am on very good medication. He seemed satisfied with that. I try to be as well.
I was, and still am very good at keeping it light. After all, the worst case scenario with this disease is only a possibility. I’ve even nicknamed it the “Might Suck”. And in keeping with the spirit of optimism, for every “might”, there is also a “might not” and this is where I am leaning.
Today marks the one year anniversary of when Dr. F delivered the “likely” diagnoses to me. I still need to tell my father.