After several years of cancelling plans, prolonged flares, pains and medications our friends and loved ones can often start to grow tired of hearing the same news repeated; almost as tired as we are of repeating ourselves… so we go quiet.
I found it difficult to want to say the same things over and over. “No, I am not feeling better yet”. “No. The medications haven’t cured me”. “Yes, I am tired of all those doctors appointments”… and so on. In fact I have become so tired of saying these types of well used phrases that I avoid saying them by avoiding people.
The other alternative I have found is to never speak about myself in conversations and only ever discuss the other persons life. Only ever talking about their achievements and/ or problems. It feels as though I must become even more invisible in order to have any social contact whatsoever.
Describing my day to day life seems to be boring to healthier people and so I keep my daily challenges to myself. Aside from this blog no one would ever know what happens in my chronic illness battle and so my readers are privy to information that most of my friends and family don’t know, which is, what my life is really like and what I really think and feel.
It seems a common experience that many chronic sufferers start to go quieter and quieter with each new year and each new challenge. There are no doubt many different reasons why we do this but for me it’s because I feel this growing pressure to keep my struggles to myself and that people don’t want to hear what my life is like as it is not exciting to the average person.
As much as I can I try from time to time to do the things that other people may find interesting and entertaining, but it can come at a very high price for me and considerable pain. So fun and interesting things can be few and far between. Too far for most people, but incredibly precious to me.
Any mention of illnesses can be interpreted as whinging, negativity and whining by other people and so often we feel backed into a corner where we have nothing left that we can say about ourselves.
So I go quiet and become more invisible.
It has been almost a year since I have had the ability or opportunity to meet up with a friend in a social setting as I can’t predict when I will be able to manage to do anything, and I think it would be interpreted as rude to call them at short notice to do something. I wouldn’t want to do that to a friend.
So I go quiet.
I tend to email, text, message or Facebook people with little bits of information that I think they would find fun or interesting ie. A joke or a picture of my furries and hope that it is enough to keep in contact.
I have tried to keep relationships going by doing things like sending my artwork to people I care about so they know they are in my thoughts and heart. They never know how truly difficult those pieces can be to produce and the challenges I face in making them. But I do it in the hope that a picture may speak a thousand words while I remain quiet.
Sometimes I can’t help but think it’s a sad fact that many people consider the struggles and challenges that people like me face as being boring and inconsequential. It is also difficult to accept that they also may feel sorry for the carers/partners in our lives who spend a lot of their time taking care of us. We become a reality that no one wants to acknowledge or know about. They are just glad that it isn’t their reality.
It may come as a complete shock to many people, almost all people, but my life still has many of the emotional elements it once had. I still laugh when I can. I still joke when I can. I still dream when I can. I still hope. I still create. I still love. I keep trying to do these things as well as being ill, and despite being ill.
But people don’t know it and may never know it.
The people who do get to know more about me and my life now are made up of a select few who have withstood the test of time and have proven their loyalty and sincerity through genuinely listening and wanting to stay connected. No matter what I am going through. Those few people who truly care.
… everyone else gets my quiet.