The Mighty Logo

The Best Thing You Can Do for Someone Newly Diagnosed With Dystonia

The most helpful emails in health
Browse our free newsletters

I recently received an empty email from someone I don’t know. I usually ignore and delete them when it happens, which I did with this one… but something kept telling me to respond to it. I was working on a new business and thought maybe someone sent a message through the contact link on the website and left it blank by mistake. I felt there was more to it, though, so I had to respond. Thankfully I didn’t empty my deleted emails folder yet, so I was able to retrieve it.

I sent a message back saying that I received an empty email and was wondering if it was a mistake or if they meant to write something but left it blank. What came back to me was a big surprise — and a reminder that there are no accidents!

The woman responded saying that she read an article I wrote about a neurological movement disorder I have called dystonia. Her friend Nancy was recently diagnosed so she was gathering information for her. She was going to email me to ask for advice, but forgot to, or so she thought. It turns out she accidentally clicked the link to my email address in the article and hit send; thus the empty email.

We had a wonderful conversation and laughed about how it all came about. She then put me in touch with Nancy, who was struggling to find her way with dystonia. She told me how devastated she was by her diagnosis and how it was affecting her life. I was able to relate because dystonia turned my world upside down early on as well. She was also unsatisfied with her treatments, some of which didn’t help me either. I offered some alternatives she had not yet investigated that have since helped her a lot. This opened doors to other treatment options she found helpful and shared with me to try. The more we spoke, the more our friendship grew, and the more we’ve been able to help one another better manage our dystonia.

If you know someone who has been newly diagnosed with dystonia (or even had it for a while and is struggling), the best thing you can do is listen and let them know they are not alone. Any chronic illness can be lonely and isolating, so this is important for them to hear. If you don’t have dystonia, please be like Nancy’s friend and gather as much information as possible. Also, connect with others living with dystonia to help you better understand what it is like so you can help your friend or loved one navigate these new waters.

For those with dystonia, please use your personal knowledge to guide them the best you can. Let them know about available treatment options and share your experiences with different therapies. Be open about all your experiences, physical, emotional and otherwise. Be the lifeline you wished you had, or were fortunate to have, when you were diagnosed and didn’t know where to turn.

Whether you have dystonia or not, let your friend or loved one know you are there for them and mean it! Listen more than you speak. People need to grieve, and we have to allow them to without interfering with that personal healing process.

Life with dystonia and any other chronic condition affects more than just the person living with it. This was evident in the way I became friends with Nancy. It is so important that we do all we can to help each other best cope with our new life circumstances.

I am so glad I listened to that nagging voice in my head to answer that empty email from Nancy’s friend. I rarely to never do that, but this time I had such a strong pull to respond. Along with the things Nancy and I have helped each other with, the life lesson I learned again is to always follow our intuition. Rarely is it wrong!

man and woman smiling

Originally published: January 29, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home