People, in general, are very nice. People, in general, only want the best for you. People, in general, care that you are ok. People, in general however don’t want to hear bad news. It is much easier to support a person when there is something positive to say about them. It is harder to support a person when something negative is happening. That doesn’t mean people don’t want to offer their support, it is just harder to give.
Over the last two weeks I have come across a new emotional aspect to my illness, one that I hadn’t expected. For about two months I had been making solid progress. Every week I increased one of my activities by 10% and was able to consistently do this. I had gone from walking about 0.5 miles with a break half-way to walking 1.15 miles with a break half-way. My friends and family were so proud of me and so happy for me. I was so very proud of myself and so very happy for myself.
Every few days I would speak to my dad and he would tell me just how well I was doing and how great it was that I was making progress. He was so supportive of me and reassured me that it didn’t matter that progress was slow but what was important was that progress was being made.
My boss was delighted that I was making progress and was more convinced than ever that I would be eventually back at work and eventually working full-time.
Everyone had been so supportive for the first six months when progress was extremely limited and indeed for the first couple of months when my health had only gone backwards. So many people had worried about me and offered me advice (some just plain ridiculous but appreciated). I had felt that I had the world behind me egging me on to recovery.
About two weeks ago my health began to slowly go backwards again. I had reached a plateau in progress but hadn’t consciously recognised that I needed at this point to stop and consolidate my progress. For two weeks my health has been slowly going backwards. Old symptoms such as pain had begun to slowly return. Walking my now 1.15 miles every second day resulted in fatigue, breathlessness and weakness. It took me two weeks to realise I needed to go back two weeks on my progress and stay there until I felt I was ready to start making progress again.
This isn’t a relapse, not quite, but it is a stopping of my progress. Progress I (and my family and friends) had been so very proud of. The progress that had given me and my family and friends such confidence that recovery would eventually be possible. During these two weeks as my health slowly dis-improved, family and friends have continued to say how proud they were of my progress. How great it was that I was making all these big steps. Wasn’t it great I was feeling so much better?
The problem therefore that I came across, that I hadn’t expected, was how do I tell these wonderful people that this progress they are so proud of me for has stopped? How do you disappoint people? How do you say something that will make them worry? I had a slight sense of failure. I was the one who had pushed things too far and had caused myself to go backwards. I was the one through my blogs and other methods who had filled them with such hope and happiness – how was I going to dash all of that?
My husband of course had known I was pushing it and has constantly been trying to convince me of this and encouraging me to slow down. It was of no surprise to him therefore when I had to go backwards slightly. He does not see this as failure and in my heart of hearts I also know I haven’t failed. I have always said to anyone that would listen that M.E. is a fluctuating illness, that my progress would inevitably meet some obstacle it would struggle to get over.
I knew this but I still felt I had failed. Telling others, who unlike my husband, weren’t physically around to see how I had begun to struggle again was hard. They seemed so happy in their pride in me. They seemed so happy in their hopefulness at my progress – I just didn’t want to destroy it.
Of course my reality was that I needed to tell them. I needed their support and by not telling them they couldn’t provide me with the type of support I so very much needed. Their constant refrain about how great it was that I was doing so well was in fact (unintentionally) not support at all but undermining my confidence that I could bounce back from where I was.
Of course my telling them didn’t make them be less proud of me or less confident that I wouldn’t eventually reach the point of some form of recovery. They quite logically said that I had always expected the road to recovery to be potholed. They quite logically recognised that if I had made such progress before – I could make such progress again. I am sure they were disappointed and sad for me but it didn’t alter their support or love. For this is all that really matters.
M.E. is a disease (perhaps like many others) that constantly throws new emotional hurdles at you. You get your head around one hurdle then bam you are hit in the shins with another one. At times it can feel like the emotional aspects of this illness are harder to deal with then physical realities of it (though at times it is the other way around).
I have always argued that openness about the illness is key to helping people understand what support and how much support you need. Openness is however something that is very difficult to consistently do. As humans we have innate desire not to disappoint or worry others. Often being open requires you to deliberately disappoint and worry people. People need to know however your reality – without this they are ultimately headed towards an even greater disappointment.
I had been dishonest with myself, I had known I was pushing my baseline and yet I had allowed myself to continue. Desperate that when we went on holidays today that I would be able to do so much more than I previously could. I had been dishonest with others by allowing them to continue believing I was making great progress. If I had allowed this dishonesty to continue, would it eventually have been unsurprising if people had begun to distrust me when I later said I was doing well – even if this was true?
Being open therefore is crucial. People, especially those close to you, need to know your reality, where you truly are with your illness. It may not be where they truly desire you to be but that doesn’t prevent you having a responsibility to be honest and open to not only others but to yourself as well.