A friend was recently diagnosed with a long-term condition. She told me that she is struggling with how difficult it is to talk to her partner about it.
It took me back to how my husband and I dealt with my RA diagnosis. It is so hard to understand what it is like to live with chronic pain and illness unless you have experienced it, and I remember being so exasperated that my husband just didn’t ‘get it’. Let me qualify that – he was sympathetic, came to appointments with me, held me when I cried and did more than his fair share of housework. He was (and is) amazing. But he was puzzled by the way the illness affected my whole being.
I remember in those first few months having discussions about it. He would sit and ask lots of questions, and I would try and put into words what it felt like, physically and mentally. I remember talking about feeling like my ankles were full of broken glass, and how when I had bad fatigue, I would be daydreaming about the feeling of being in bed and falling asleep. I remember describing how thinking about the future filled me with fear, and how I really believed I was going to die soon and had to plan for the family in my absence.
It all sounds a bit morbid, but those are some of the deep, dark thoughts that were going on. They were so hard to articulate, but so important to voice. When they are kept inside, they stew and cause damage.
So my encouragement for my friend was to keep trying with the talking and describe what everyday activities feel like. If you are patient, in my experience the people who care for you will gradually begin to understand more what life is really like with a chronic illness. And that has meant I feel a lot less alone; we’re in this together.
It’s s important for anyone facing chronic illness to have someone to talk to. That’s partly why I started this blog – so do drop me a line if you want to talk!
The Chronic Parent 