Where do you go if you have questions about an illness or a child’s actions?
What about if you thought you might have a genetic connective tissue disorder and wanted to know more?
Would you search for and join an online support group?
I had been struggling with symptoms of illness I didn’t know much about. Gastroparesis sounds complicated and weird and the symptoms are so diverse, I just wanted to know if there were people out there, like me, who found eating to be something that was no longer able to do like the rest of the world.
I had developed a complete aversion to food in a society built on the stuff.
I posted on Facebook. I posted on Twitter. I received pity and wonder and of course the expected, “I wish I didn’t want to eat,” but no one understood. Then I searched for gastroparesis support groups.
It wasn’t too long before I found my people. Those people for whom food was a literal four-letter-word. But are support groups always supportive? I posted this question in a small fraction of the various groups I am a part of.
I was surprisingly overwhelmed with responses. It seems that the concept of having a group of people who understand an element of what we are going through, providing that much-needed empathy, is not something uncommon whatsoever.
I found that I wasn’t the only person who belonged to multiple groups for multiple types of support. Chris shared, “I am a part of a homeless group, an addiction group, an anxiety group and some hobby or for fun groups…any time u can connect with others that feel the same as you it is empowering.”
In the case of Stacy, a person with a condition she didn’t know anyone else with, she found, “it’s helpful to talk to others with similar experiences.”
Support groups not only work to help people get that much-needed connection but in some instances, they can assist with a diagnosis by making the patient and their family more aware of what are symptoms and what are not.
Cryss shared, “I actually began to learn the names of certain maladies, such as Allodynia, and Fibro Fog. Before long, I was in tears. It wasn’t just me. I wasn’t “crazy”. I wasn’t alone. It later prompted me to begin a YouTube channel called Cryss’ Fibro Chronicles.”
Support groups have personally helped me put names to such things as Ehlers-Danlos Syndrome, visceral hypersensitivity, dysphagia, neuropathy, and autism among others.
Through online support groups, I learned how to explain various symptoms to other people. That is something I’ve struggled with for years: Explaining things my body feels. I don’t doubt I have studied writing just to learn to describe sensations within my own body.
Another thing a support group can effectively do, is connect people with resources.
In local Ehlers-Danlos Syndrome patient support groups, members are able to recommend (or not) particular health care offices that are familiar with the condition. I’ve had the opportunity to both benefit from advice about doctors as well as share my own experiences at times.
Whether you are in need of resources, a diagnosis, or just someone to bitch to about your cane breaking, or your parent not allowing your wheelchair in the house, or your mother not listening to you about your pain–there is someone out there who has experienced the same thing.
The overwhelming consensus is that support groups work.
One thing I’ve found in our communities: There are other people out there just like you waiting to share something with you that they wish someone would have shared with them.
I love my zebra community. Without friends with Ehlers-Danlos that I’ve met online, I wouldn’t have the energy or knowledge to advocate for myself.
By learning how to advocate for myself, I then learn things I feel I need to pass on- so others don’t have to suffer as long as I did.