Tuesday, October 31, 2017

**RESOURCES** Chronic Disease Support Groups

Sorry, all. Haven't been posting because my sarc has been raging and keeping me too wiped out to get up and about much. Still pretty exhausted and feeling super cruddy, but wanted to share a couple of helpful resources for those living with chronic diseases. Since I am wiped out and writing this from the bed, I will keep it short.

  • Inspire is a site of groups and communities for people dealing with all kinds of illnesses. Sarcoidosis brought me there, and the people are very supportive.
  • Facebook group, Sarcoidosis UK is awesome. Nice to communicate with people who understand. We share wellness info and commiserate about the lack of awareness in society and the medical profession. Felt weird to join a UK based group, but I'm glad I did. The next 2 groups are also on Facebook:
  • Sarcoidosis Support Group This is the smallest of the 3 groups and it might be a good starting place for newbies.
  • Sarcoidosis Support This one is the largest of the 3 groups. There is a lot of sharing of stories about when and how people found out they had sarc. Helpful on days when you are wondering if you're the only one with certain symptoms.
You all know that I have a love/hate relationship with Facebook. The groups are one thing that keep me using it. These groups are helpful mostly because they help me realize I'm not along. That's so important. Now that I have moved to another state and lost my original care team, I feel more alone with this disease. I'm often terrified at the lack of knowledge about sarcoidosis and it's sometimes hard for me to communicate with other people about symptoms. No one wants to feel like a "big baby" or to seem like they are whining. Even with your doctors, you feel like you might be leaning on them too much. At least when I am communicating with other sufferers, I know that they really "get it".

Anyway, I hope that some of you will find these resources helpful. Remember, there are support groups for almost any kind of disease or struggle. Reach out, don't give up, and don't give in. 


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