Living with FND has turned my life upside down. In the past I was a real ‘social butterfly’. I was always the first and last person on the dance floor. Always up for an adventure. My friends always saw me as fun and free spirited. Then came the illness.
I have come to recognise that with chronic illness there is one prominent change. That change is isolation. Those around you don’t plan to do this but unfortunately it really is inevitable.
It all starts with lack of invitations. At first, many friends/family/work colleagues would continue to invite me to different events. As I continued to turn these down in the first year of my illness as I was so poorly, the invites began to lessen. Perhaps they felt I was being rude? Or lazy? However, the truth is I really, really wanted to go to all of them but I was just too ill. If I’m honest, I wouldn’t want to invite someone like me to a ‘special’ event. Knowing that at any moment I could fit or even faint would put even the kindest person off! I first started to feel the rejection when a colleague who I felt very fond towards got married last summer and she invited all our mutual colleagues apart from me. I was extremely hurt but I tried to put myself in her position, tried to understand.
I have become more aware of this isolation. I know how blessed I am to have my children, my fantastic boyfriend, my best friend and my close family. Having a chronic illness really makes you realise those who care. They are the people who are always there despite how much you change. I think they realise that I have no control over it. I miss the ‘old me’ and I’m sure they do too! However, they stick by me through thick and thin and help me to remember the good old days.
Earlier today I came across this website that explains the heartache of chronic illness and isolation.
The truth is it’s no one’s fault. My colleagues and friends who have stopped involving me in different things are not nasty or rude. They are human. They don’t have to understand what it’s like living with FND or any other chronic illness. I know this and although it can be hard, I will always try to understand. I hope that the lack of invitations isn’t because of an actual dislike but more because of a lack of understanding.
If you have a close friend or family member who has any type of chronic illness, please don’t stop involving them in everything. Don’t give up on them like so many have given up on me. One day, on one of those rare ‘good days’ they might be able to come along and it will do them a world of good. Feeling isolated can make life so much harder for someone who is already suffering enough!
Thank you for taking the time to read my story.