At any stage of Parkinson’s, you might find it hard to talk to other people about your condition. But being able to express yourself can make a huge difference to your daily life, your relationships and how you feel about Parkinson’s.
We asked you to share your experiences and tips.
- “I am open and honest about having Parkinson’s. I try to use a positive approach and, where appropriate, humour. I always explain that each person’s symptoms differ so I can only tell my story. The most important thing is to raise awareness and support each other.”
- “I was diagnosed three years ago. I told family first and then put a post about on Facebook. The hardest part was telling my boss, but my company were supportive.”
- “When I was diagnosed I found it difficult to tell my family, as I felt I was telling them to get ready for bad times. I didn’t tell anyone else, so my friends and work colleagues didn’t find out. I wanted to put it off for as long as possible. I think my biggest fear was being treated differently – like I wasn’t me anymore. I carried on like this for a long time, until I finally saw a Parkinson’s nurse and had to admit I could not deal with it in that way anymore. I broke down with relief at sharing all the feelings I had hidden inside so as not to concern anyone. I can now talk about it more openly, though I don’t discuss the future too much, as I want to live for the now.”
- “My husband was diagnosed in August 2015. It’s nothing to be ashamed of or embarrassed about, so we just tell people up front. People either don’t say much or are very supportive.”
- “I was diagnosed at 32 after showing symptoms for three years. I hid it for over a year and it just caused more stress and anxiety than was necessary. I am now open and happy to talk about it - to raise awareness of the condition, if nothing else.”
- “One of my best pals was diagnosed a few weeks ago and I’ve seen her for the first time today. We’ve had a great no-nonsense talk about how she came to be diagnosed and where she is now. She has a great ‘get on with it’ attitude.”
- “I just came back from a family gathering. There were some cousins there I only see once in a blue moon. I felt I didn’t want them to know about my condition as I dreaded the ‘sympathetic looks’ I knew would be on offer. So I spent the entire time hiding one hand behind my back (ever so casually, of course) or holding one hand firmly in the other from time to time, which works for a while. Everyone was so busy catching up on family news that I think I got away with it.”
- “In my experience it’s easier to tell people once you’ve got over the initial shock. Why hide it? (Says he who hid it from his wife for three months.)”
- “I got my husband to tell our children (both adults) the day I was diagnosed. Strangely they had both independently already suspected I had Parkinson’s, as had I, but none of us said a word. (The elephant in the room scenario!)”
- “People react differently to being told. Some ask how it affects me, others are shocked and don’t know what to say. I usually reply with a positive statement like, ‘Yes, I’ve had Parkinson’s for 10 years now, but it doesn’t stop me doing my job effectively, or enjoying life.’”
- “When I met my husband, I didn't know how to tell him that I had Parkinson’s. I used to sit on my hands to stop them from shaking. My friend suggested I practise telling her, so we had a few attempts before I told him. I was glad because he was so supportive. We got married in 2018.”
Telling friends and family
Having that first conversation with family and friends about your Parkinson's can be difficult, but you may find it helps you feel better about living with the condition.
Watch our video to hear about people's experiences of talking openly about life with Parkinson's.
Paul on telling his wife
"She felt that it was better just to get it out there. I took her advice and it was the best thing to do. I just go with the flow now - if I shake I shake."
In this video Paul shares his experience of telling his wife about his Parkinson's.