I know many people who would love to go to a local support group, but there either isn't one in your area or you are not well enough to attend. This is the beauty of online support groups. However, if you are well enough to get out and go to a support group, please consider one. The human interaction can do wonders! Join one even if it is not for the health condition you live with. Before writing off this idea, please read about my experience going to a support group for a condition I do not have and how it has been of benefit.
Over a year ago, I was having lunch with a friend who has dystonia and someone we had both just met who has essential tremor (ET), a sister movement disorder. That day we learned about a local essential tremor group that meets monthly. Even though I don't have ET, I went to the meeting to support my friend since this was his maiden voyage and he was nervous.
Since I have dystonia without a tremor unless I force my head the way it does not want to turn, I felt like a fish out of water when I first walked into the room. I wasn’t sure I would be welcomed since I had a different condition, even though dystonia and essential tremor are relatives in the movement disorder family.
My concerns went out the window when I was welcomed with open arms. Everyone was so friendly and curious to learn more about me, my condition, and how I manage my daily challenges. What we all discovered is that even though we have a different condition, we share so many similarities in our personal lives, primarily those that affect us psychologically, emotionally, and socially. Below is a picture of some of the group regulars.
Some of the members have very pronounced symptoms, while others are only noticeable at certain times. Regardless, everyone lives with one or more of the following: anxiety, fear, social phobia, shame, guilt, anger, frustration about poor medical care, and of course frustration with daily living by not being able to do tasks that were once so simple. They also have incredible empathy, compassion, and kindness… the qualities I admire most!
We meet once a month and the number of attendees run from about 3 to 15 people. It is such a nice time for us to share what we experience on a daily basis, information about medical advancements, personal stories, and sometimes nothing even related to our health issues; just fun conversations in a safe place. Everyone has a different protocol of treatments, all with varying results. Everyone is eager to learn and excited to be among those who understand. These meetings allow us to let go, where all of our “problems” no longer exist.
Communicating online is of course wonderful, but to hear a voice, see an expression, give and receive a real hug, among many other things, is very healing. Please look into various support groups in your area and if you are well enough to attend, please take advantage and get to know the many wonderful people in your area who are just like you.
Please also consider one of the many support group meetings that the Dystonia Medical Research Foundation holds all over the country. Click on this link for upcoming events and meetings. If you are in the Nashville, TN area on September 27th or would like to visit that fun city, I will be speaking at a dystonia meeting along with Dr. David Charles from Vanderbilt University. The details are below. This is a free meeting and anyone can attend. Registration is online, but walk-ins are also welcome. I would love to meet many of you in person so I hope you are able to attend!
Remember that September is Dystonia Awareness Month! If you would like to learn what you can do to help, please contact the Dystonia Medical Research Foundation by phone at 800-377-3978 or by email at firstname.lastname@example.org. Also, in honor of Dystonia Awareness Month, I am offering a 20% discount off my book, Diagnosis Dystonia: Navigating the Journey. Please use the coupon code AWARE at checkout. Pick up a copy for yourself, or get a few copies for your loved ones and doctors. Thank you for your support in helping make dystonia a household name!
Tom Seaman is a chronic pain and dystonia awareness advocate, health blogger, motivational speaker, and author of the book, Diagnosis Dystonia: Navigating the Journey, a comprehensive resource for anyone living with any life challenge. He is also a Certified Professional Life Coach in the area of health and wellness. Tom volunteers for the Dystonia Medical Research Foundation (DMRF) as a support group leader, for WEGO Health as a patient expert panelist, and is a member and writer for Chronic Illness Bloggers Network. To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter @Dystoniabook1 and Instagram.