Everyone has different ways of coping with GBS, CIDP and variants, and it can definitely be a struggle when you look completely healthy on the outside. Some people will certainly be judgmental at times, not understand the severity of the disease or even in some cases think that the person is exaggerating their symptoms.
With all of this in mind, on June 22, 2021 we held our monthly Coffee Chat with 26 of our member in attendance, to discuss these very situations. The discussion was centered around the theme of “You Can’t Have a Disorder, You Look So Good,” whereby members opened up about the struggles of living a life with an “internal” illness, that is not always visible or obvious to others.
One member shared a story of a time when she used the handicapped parking spot in a parking lot and a stranger came up to her to confront her about the fact that she did not look handicapped. She made the decision to speak with the woman calmly and educate her on her illness. She told her that not all people who are disabled look handicapped. “I wanted to use that moment as a learning experience for her.”
Additionally, what people with GBS and CIDP know all too well is how important support can be during the pre diagnosis period. During the chat we discussed how family, friends, and even doctors have preconceived notions about the symptoms experienced with GBS and CIDP. It’s extremely important for our members to find the right doctors that they can trust and to surround themselves with family and friends that support them.
These diseases physically and mentally alter your life and the diagnosis of these diseases can often be a relief. “A diagnosis can also be a way of ownership and control during a time when you are certainly feeling a lack of control,” said Associate Director or Engagement, Kelly McCoy. Some of our members discussed the help that positive thinking has on the body as well as some beneficial experiences by moving onto a plant based diet has had on their lives.
As a group our participants discussed that people living with GBS or CIDP need to understand that they are not to blame for their neurological diseases. While the day to day struggles are tough, the message from the participants was clear: people living with GBS and CIDP can live full, long, and happy lives.
The Foundation’s monthly Coffee chats are a great way for people with GBS and CIDP to connect with shared experiences through a community that understands the struggles associated with these conditions. Please see our calendar of events for upcoming monthly coffee chat schedule. We hope to connect with you soon!
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