Last updated: February 2021
"I don’t think it’s a benefit to talk to other people and post my business online," is what I hear others say. Sure that is their opinion. But some people would like to know about people's journey and experiences to see if they could learn something or what they try can work for them. I feel as if someone who has not been in a group session at all will not understand what goes down in a group discussion. There are so many beautiful people in the world that you can relate to and that can relate to you.
Looking for lupus support groups
When looking for a support group:
- Read the description of the support group if its online to see if it's going to fit you.
- Reach out to the people that are in charge of the group and get a feel of their vibe.
- Try and attend 1 meeting to see if you like it.
- Try looking on social media. You’d be surprised what groups you will find or groups you can create and people will join.
- Remember there is always someone going through the same thing as you.
Support group etiquette
While in a support group:
- Do not be afraid to open up and be the person you are. If they can not accept you for who you are then you do not need to be in that group.
- Do not be negative. Being negative will make others not want to be surrounded by you.
- Do not judge others. If you judge others you might not be invited back. You do not know other people’s situation. Everyone is their own person.
- Remember support groups can be at different locations – your house, a rented building or space, etc.
- There are different age groups so you will not feel uncomfortable about the age bracket.
Sharing your lupus story
Some people don’t believe in reading other stories, but I do. Sometimes people can be so selfless and ignorant. If you do not want to see or read something then get off that particular page. Everything does not have to have a negative remark. Over time I learned that an angry person who is angry with themselves tend to lash out on others. That’s another reason why I approve of support groups because you're not holding it in. You can talk to someone.
Just because you have an issue with things does not mean you have to hurt other feelings. People do matter and so do their feelings. Remember sometimes you have to talk to someone else other than the people you are having issues with. It also relieves stress when you talk to others. When I joined a support group I felt like that was the best thing that I could do. Those people became my friends and family. I knew I could call on them at any given time.
The support group means too much to me because it helped me get through things I did not think that I could get through. I was taught wisdom.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?