Mine has been a silent voice. I had thought, as Lydia has, of speaking up, finding a place to let others know of the experience, but there were no clear opportunities until now.
While I have considerable writing experience, the feeling was always that publishers would want the voice of the sufferer, not the bystander. That is to say, there is a shadow of guilt in speaking about the impact ME/FM has had on me, when it is my spouse who has suffered the most impact. Should mine be more than a silent voice?
The details of the onset are a little foggy for me. Not for my spouse as she has explained those details multiple times in the course of dealing with it. It has been about a decade now. We were dealing with our kids, Easter was upon us, I was working full time and heavily involved in graduate studies, and my wife was working full time as well. Our young daughter, my spouse and I all got sick at the same time.
We all felt groggy, with flu symptoms. I recall thinking I would drink less coffee; that I must simply be a little worn down. Our daughter recovered and, to my memory, I did not really connect it with what my wife and I had. Over a period of days the flu symptoms turned into cold symptoms and we (my spouse and I) both seemed to drag. Everything took more effort than usual. After about a week, I recall thinking I had had enough of it. I recall thinking it was ridiculous and I was not going to drag all day. Coffee perks me up and it was simply a matter of having enough coffee to wind myself up enough to get things done. That is what I did and that evening I plunked into bed feeling tired but better than I had for days because I had got things done.
As the days went by I started recovering. My spouse did not. After two weeks, I was back to normal and operating at full strength. My spouse was not. It became a stressor that she was not recovering and began to look like the daily workload was preventing a full recovery. I felt sorry for her and guilt that I was busy to the point of not being able to relieve as much of her workload as I would have liked.
My spouse did slowly start to recover. It took about a year – a year! She was not back to normal but maybe eighty percent. That was progress, but it was not a full recovery. There was something of a rebalance in workload. It was awkward as commitments had been made and altering them was a slow process. There was also the question of how far the recovery would go.
Over a year and a half, we adjusted to the new normal. There were up days and down days, but eighty percent is eighty percent. It was not the daily drag and we got used to it. Perhaps, and the reader is left to judge for themselves, this is the bystander point of view. My spouse who had not returned to normal may well have a different perspective. Certainly there were glimpses of frustration, discussions of struggles managing workload, and the like. It took a long time for her to teach me that the impact was not the next day but the day after that.
About a year and a half after the initial onset my wife relapsed. I recall thinking that a few days and things would return to normal. Surely this was just a down period, but it was not. It was a relapse and my spouse, who was always a few steps ahead of me, seemed to realize sooner than I did. I really was a bystander; aware of the dots but not necessarily joining them. When she started to express concern about running out of sick leave, it dawned on me that she had been taking a lot of sick leave. When she had to negotiate a leave and start a lengthy paperwork process, it registered that things were not improving. This was not good and I began to wonder where it would lead. I began to feel sorry for her not feeling well, for having a huge lot of paperwork while suffering, having medical tests to schedule and not knowing if she would recover and make the effort unnecessary.
Through the process I continued to wonder how to support her as the uncertainty led to necessary reductions of workload. More frequently she went to bed early and I had many evenings to myself. There was a period of the surreal wondering if it was as bad as it appeared to be. It was. Was all the paperwork needed? It was. Would a full period of leave from work be all it would take to recover? No, that was unrealistic wishful thinking.
Work reductions had improved the situation somewhat but did not bring things back to normal – the normal before the relapse, that is. My wife showed signs of frustration. It was difficult to know how to navigate the circumstances. For example, concentration issues made filling out paperwork difficult and it was done in many very short bursts of effort. Asking to help simply added to the frustration because dictating what was needed would take as much, if not more, concentration. In terms of knowing how to deal with the situation, it was awkward that there was no definitive diagnosis to use to find meaningful information.
We were fortunate that we could afford the circumstances. The illness and reduction of workload led to a good deal of research. There were numerous discussions about the illness. We both fit the CDC description of onset, but it was a syndrome and that meant there was no known solution. There was a doctor who specialized in ME/FM and debate arose about the merits of seeking a doctor who could not cure. This was a different view of medicine but we decided that it was worthwhile to have as much documentation as possible in case anyone ever contested the situation. There was also the possibility of a second opinion finding a way to cure.
While the situation has never been cured, the reality is that my spouse has got much better at managing it. She preemptively relaxes before events so that the recovery stage is not as challenging as it used to be. This has led to the unusual circumstance where she can put on a ‘normal’ appearance when we visit friends. This leads the friends into thinking that things are ‘normal’ and they do not appreciate that staying up late one night leads to spending the day in bed a couple of days later. The delay is something that, as a bystander, I have come to understand – it makes no sense to me – I just understand that it is how it goes. Over time I have come to have a better sense of symptoms that are emphasized with fatigue – difficulties completing sentences, hesitancy with decision making, etc.
In our case, the story has had challenges and there are times, as a bystander, I miss going for a walk together. There are nights when I miss seeing my spouse reading. Sometimes I wish we could go to the movies. Perhaps the biggest surprise has been the effect of my spouse wearing dark polarizing sunglasses when we drive in the car. I find on longer trips I have lost a sense of whether she is awake or asleep. It has been about a decade of being the silent voice. However, one plays the hand they are dealt and in our case we have made the best of the challenge. In our case, my spouse insists cruise ships provide a cabin that allows one to sleep whenever necessary. My silent voice goes along for moral support!