Secrets… Me? Nope. Not about my health – I’m usually an open book.
When I was in the throes of diagnosis I think I spilled the beans to almost every single person I came into contact with. It just happened. I didn’t feel that what I was going through was something that needed to be hidden, and being unable to see wasn’t something I could hide particularly well anyways.
On Saturday I attended a seminar for people recently diagnosed with MS. This is a clip that was played during the first presentation of the day by the neurologist filling in for Dr Traboulsee:
At the seminar, the topic of when and if you’re going to tell your employer came up repeatedly. Oops, I guess I hadn’t received the memo that this was something that should be kept under wraps. From what the other newly diagnosed people were saying, it’s a disease that one often feels stigmatized by, embarrassed to have, even ashamed of. Really? I missed the memo for that as well. I can understand that many would feel reluctant to tell an employer about their MS if they felt that their job was in jeopardy if they didn’t have perfect attendance, or if they were struggling with performance issues. However, I’m in the very fortunate position of feeling quite secure in my job – I can’t imagine trying to hide my personal health issues from them.
In retrospect, how would I have explained my inability to see? Can you imagine their thoughts if they had seen my computer screen without being aware of what I was experiencing? How would I have explained that I couldn’t drive? Maybe others just would not have gone to work if they couldn’t see. Maybe they would have stayed at home and their employers wouldn’t have been aware of how profoundly they were affected. Granted, I was the only person at the seminar that had acute bilateral optic neuritis as my first clinical relapse, so perhaps it would have been fairly easy for the others to keep their employers in the dark. One person had only suffered a few twitches a few times and had been diagnosed. Jealous.
Other than the “does your employer know?” topic, I found the seminar to be very relevant. So many of the stories told were similar to my own experiences. I laughed out loud and almost spat out my coffee when one of the speakers told a funny story about their IV steroid treatment at their local hospital. Another person explained that they had odd pains in their arm that felt like bugs were biting them! Me too! It was lovely to feel that I’m not in this by myself, I’m in good company – many of the newly diagnosed are well educated, thoughtful, intelligent people. Craig is a partner at an accounting firm, Robert is a licenced mechanic, Paula was a school teacher, Kat is a professional engineer, and so the list goes…
Many of us have had symptoms for years and were unaware of what was happening to us. Looking back, my tingling and numb toes, facial twitches and repeatedly sore left leg were probably all early symptoms that went undiagnosed because I felt they just didn’t warrant a trip to visit the doctor. In all likelihood, the doctor probably wouldn’t have recognized them as MS symptoms anyways.
The final speaker on Saturday was Donna, a psychologist. Off the top, she had us do an exercise in self-awareness and recognition of what we have control over. Then she led us through a breathing exercise to help us cope with difficult situations. The examples she used were: a stressful day at work and thoughts of suicide in the wee hours of the morning. Good Lord, was she reading my mind? I truly am not alone if these are her usual examples. Often teary-eyed these days, I was very close to a complete breakdown and had great difficulty in calming my breathing and keeping the tears at bay. Sheesh, I wanted to glean everything I could from the seminar, not run from the room crying. The breathing exercise was followed by a visualization session. I managed not to break down and stayed with the exercise right through to the end. While I didn’t verbalize my experience along with the others, I did take a lot away from the sessions. Perhaps I should consider getting some help. Donna explained that as a group, people with MS are more likely to be depressed than those with any other chronic health issue. I believe it. I’m there now. My own mind takes me to terrible places in the wee hours, it’s often difficult to acknowledge even to myself the dark and desperate places I’ve gone to in the night. During the day things are usually much better, but the nights can be awful. On a couple of occasions I’ve written some of my thoughts as they evolve and password protected the files in fear of anyone else reading them. The next morning I don’t even recognize the person who wrote them.
In pursuit of the self-help theme I’ve joined a support group that some of the people at the seminar have been attending. Can you believe it? Not usually one to be drawn to that sort of activity, I’m surprised to find that I’m looking forward to my first meeting. My new acquaintance, Paula, will be attending and the Patrick, the group’s coordinator was relaxed and friendly. I think a few others from the seminar will be there as well.
So, what do I do now with all my new information? Reluctantly, I should admit that I need some help with my mental struggles. See? I used the word should – meaning that I still haven’t acknowledged it. Surely I can take something more positive away from the day… Hmmm. I understand white matter a little more clearly that I did previously. There – something positive with which to end this entry.