When I was given the FINAL diagnosis of having MS and my response was an immediate “oh fuck” my neurologist at the time argued with me that it was an “oh damn” moment, and now, years later, I agree, but at the time, I thought he was a nut job. After all, how would HE know? HE didn’t have MS. But, he explained that the only reason that he pitied me at all, was that I would have to tell people, and that saying “I have MS” is like saying “I have cancer” but not elaborating on what kind of cancer, where or how severe it is. He went on to tell me that there are different forms of the disease, but that each and every person’s experience with MS is unique. He warned me that just about everyone that I told would know someone (or know someone who knows someone) that was diagnosed with Multiple Sclerosis and they all would have stories.
He was pretty damn accurate in that prediction. As he warned, the stories ranged drastically, from the friend that has had it for 20 years and still runs marathons, to the cousin of a c0-worker that was diagnosed and in a wheelchair within 18 months. In hindsight, knowing what I know now, and hearing so many other stories of “how it went” when they got the diagnosis, I think he did a pretty decent job of laying it out there for me. Given that there ARE so many unknowns, and the fact that MS was NOT his specialty, nor did he have any patients with the disease, he really did allow me to leave the office believing that I was going to be alright. But, just before leaving the office that day, I asked the question that had been racing around in my mind from the moment the words left his mouth, “Do I have to tell people?” He was quick and confident with his answer. “Not necessarily,” but was much less prepared for my follow-up. “Do I have to tell my husband?”
This may seem like an odd question, but really, NOT so much for me. I was in a marriage that did not provide emotional support and up to that point I had driven myself to and from each and every appointment and procedure, many times feeling scared, alone and sad, but knowing having him there wouldn’t have changed that. At the end of the day, it came down to the simple fact that he did not deal well with emotions, in any capacity, and as a result, even if he had come with me, I would have felt put upon to make sure he was okay, rather than focusing on myself. I realized that me, myself and I needed, for once, to take priority over all the bullshit and miscommunications that made up our marriage. I wasn’t sure I could handle adding him to the equation of things I had to deal with.
I did end up telling him the day after getting the news, primarily because he knew about the brain scan and that I had gone in to get the results. When he asked me directly what had transpired, I couldn’t lie, it’s just not who I am. I might have been able to “withhold the information” but when confronted with the dead on question “what did the doctor say?” I couldn’t avoid telling him. I also needed to take the kids into account. It was going to effect them (how and to what degree, I had NO way of knowing) but I knew from the get go that I would not be dishonest with them. SO, my husband knew. But I also shared with him that I had not made a decision about what I was going to tell others. The initial diagnosis of Transverse Myelitis was still out there, and could buy me time. I had explained to everyone that the doctor told me that it is a temporary condition, that would eventually go away, but that it could take up to a year or more for all the fluid on my spine to dry up and have my symptoms disappear. My thought was, a year is a long time….a LOT can happen in a year. The doctor had told me about patients with MS that have an initial flair or two that then go into remission and not have any significant issues for 5 or 10 years. What if that could be me? If I got better, and stayed that way? Was it really necessary to go through the whole pity/sympathy thing with people I knew casually through the kids schools or from the neighborhood? Would it be better to just wait and see?
About a week after getting the diagnosis and telling my husband, we were invited to a Christmas party at one of his college buddy’s homes. My folks were visiting and I thought it would be good to get out and enjoy some holiday cheer. The night before the party I arrived at the door to my husband’s office in the house (we hadn’t yet resorted to emailing each other, just always talking in the office.) I reiterated that I had not yet made my decision on how or what I was going to tell people about the MS, and asked that for the time being we stick to the original Transverse Myelitis story that everyone already knew. He got a sheepish look on his face and mumbled “they already know.” Anger slowly crept in my direction, but I stayed it with my question “who already knows?” I figured that if we were just talking about the hosts of the party, the damage was minimal, and given that they ARE his good friends, it might be a forgivable offense. BUT his response was NOT what I was hoping for. “They all know.” ALL consists of a large group that were friends in college, HIS friends, and although I was cordial to all, I was never really accepted, after all, he was a craddle-robber, marrying a woman almost 9 years his junior.
Anger arrived in full force, but was accompanied by a huge dose of hurt. This was MY disease! MY information to share (or not share) and he had taken that away from me. I came to discover that he had spent the past week, telling anyone and everyone that he had contact with, about my diagnosis. I realize now (and knew subconsciously then) that this was how he was “dealing” with it, coming to terms with having a spouse that was sick. Rather than coming to me to talk about it, he talked to others. But what he didn’t get, was that it was MINE. That may sound selfish (or foolish) but I am the one that has it, that has to live with it, and all the symptoms that come along with it, and ultimately I am the one that should have been able to decide if and when people would know about it, or not.
BUT the cat was out of the bag, and “not telling” was no longer an option. Knowing how voracious the grape-vine grows here in our city, I knew that it would only be a matter of time that this information got back to MY close friends. If I continued on with my Transverse Myelitis story to them, and then they heard the truth from others, it would be damn hard to explain how or why I had entrusted such personal information to social acquaintances and not to my true friends.
So I came out! And each and every time someone asked “How are you?” OR “What happened to you” (as I did not look like someone that should be walking around with a cane) I would explain that I have MS. I never say Multiple Sclerosis, but not because it sounds worse or more severe, but because I can’t say it! I don’t think at this point it is some underlying form of denial, as my EX claims. I literally can NOT say it! I try, and I practice, but every time, I stumble and mess it up. It is bad enough that I sometimes slur my words (sounding as if I have been drinking at 8 in the morning) I don’t need to attempt to say a word that I have never been able to say.
I was off and telling the world that I had MS (this may have been a bit too much information for a few gas attendants and shop clerks I encountered along the way) but I quickly realized that I was OK with people knowing. After all, if I looked good, and told them in a cheery way, maybe I could ward off the pity I so much wanted to avoid. Any time someone would react with “gosh I’m sorry” (which is a pretty normal response, it turns out) I would quickly respond, “please don’t be, it’s just something that is a part of my life, no worries.” BUT what I have now come to understand is that in all that time, that I was busy telling people that I was ok and that it was just a “bump in the road” I was too busy trying to prove to world that I AM strong and can handle anything, to realize that my life as I knew it, was falling apart.