It may seem completely unimaginable to many able bodied people but talking on the phone is incredibly difficult for those of us with chronic illnesses. Many of us struggle so much with staying in touch that quite often friendships and relationships can be broken simply through this lack of understanding.
For many years now I, and many others like me, have had to rely on text messages and online chatting to keep in touch with those we care about because the physical challenges of taking and holding a phone is incredibly difficult.
Often times I face the challenges of mouth sores, tremor, hoarse voice, debilitating fatigue, shortness of breath, concentration issues and crippling pain which makes talking to someone a Herculean task. I rarely explain these things to the other person as it is rather like explaining trigonometry to a cat… It just doesn’t mean anything other than mere words.
Because most people can’t imagine this reality or how this can effect someone they will usually take the view that you are antisocial, rude, unfriendly, lying or exaggerating and this only leads to a further break down in friendships and relationships.
Many years ago I used to worry and stress about losing people and them forming the wrong opinion of me, but as time went on and challenges deepened I knew I had to care less about what they though and more on coping with my own challenges. I reasoned that whoever left due to these hurdles were not really meant to last the full distance of human experiences and difficulties. I believe true friendships and feelings are something much deeper and enduring.
I recall a scene when I was in hospital after surgery where the lady in the bed next to me had a friend seated beside her patiently and quietly. I studied her as the hours dragged by and despite the fact that they had said nothing to each other she sat patiently reading a book and occasionally holding her friends hand. The lady in the bed was awake but simply stared around the room and at towards her friend. The nurse finally came with some medications and asked “have you been having a nice visit?” And to my surprise the visitor smiled and said “Yes. Lovely.”
I often think of this scene and the amazing bond they shared. Today I am in awe of such things as life has shown me very different experiences from most of my peers. I see relationships in very different ways. Bonds and connections that surpass the physical limitations of doing things together and for doing things for other people.
I look down at my beloved fur kids as they happily curl up beside me without a word needing to be said. They know when I am suffering and too pained to move but they love me anyway. There are many different levels of communication and connection and I have come to appreciate them more over the years.
Whenever I talk on the phone now I have to limit myself as much as I can as it can be incredibly tiring and invariably it will begin to take over. I try to endure that I make the most of the time I have and try to listen more than talk so that I can conserve as much energy as possible and interact for longer.
The other challenge I have felt when taking to others is that I feel like there is not that much that I can share of interest anymore. It’s not socially acceptable to talk about your health or pain and struggles and I really don’t want to talk about it anyway since I have to live it every moment of my life. But as it takes up most of my life it leaves little room for topics like holidays, careers, fascinating people I might have met recently or places I went to wine and dine. These things are no longer part of my daily life and so I feel that this makes me boring to people.
The irony is that while others may worry about possibility having to talk to me about my illness or daily experiences, I too don’t want to discuss them either. It’s just as hard for me to have to talk about and discuss since it isn’t what I want for my life and it’s not the happiest topic but since it takes up a big part of my life so conversations will tend to circle around it. Sadly.
Talking to people can be such a difficult minefield these days that I literally have to prepare myself emotionally and physically for them, and it takes time to recover from even a relatively short conversation. It is for this reason that my husband will often answer phone calls that may come unexpectedly.
These days those people who truly care for me and want to really make the most of a conversation with me will text me first to see if I am up to chatting. This is the way I know that they have some empathy and respect for my physical health whilst also wanting to catch up. It’s these people who I appreciate the most and they are also the ones that I feel most comfortable talking to about my life now.