Soooo an endo sister and I were having a conversation about how the support groups are getting to be a tad bit too much. Actually, I have had this conversation with multiple women. When I first joined them in 2016 I had a bad experience with one and have since learned it is no longer a support group 🤷🏾♀️. I am not the only one that had issues with this particular group nor group creator. This has become a reoccurring thing in 2018. From random articles being used to support opinions to people trying to make their own connection between endometriosis and other health conditions.
You see that you are not alone.
- There are other women in these groups going through the same condition.
- You can see how people with the same condition reacted to a medication you are on.
- If you have a question about something that only someone going through the same thing would understand, you can get an answer almost immediately.
- There is a search option in Facebook groups that allows you to search for something you are curious about before having to post about it yourself.
- Sometimes doctors who treat endo are in these Facebook groups.
- You can meet and connect with new people. I have made many friends and associates that are supportive outside of the group. 🎗🤞🏾
- The women you connect you support you can are there for you. I have a few women that support my blogs and I support what they do. Some of them inspired me to write this blog.
- They are a place to vent. You won’t be looked at as complaining or wanting attention. It is a group of women who understand you.
- In certain groups, men are allowed. Some women are not comfortable posting about their personal and intimate experiences where a man can see. It is understood that husbands and boyfriends want to learn what they can but some very personal things are shared in these groups.
- There is a great deal of drama. Sometimes in the comments of a post, you can find individuals going at each other about a difference in opinion. It could even be over something as simple as how someone reacted to a medication. The groups are supposed to be for support and not confrontation.
- Things such as suicidal and depression post are deleted in certain groups. Now look I understand the suicide hotline is an important resource. However, some women just need the support of their sisters to get them through things. The support of someone who understands you on a deep level is more than someone who doesn’t know what endometriosis is.
- Lupron will start a fight really quickly. Along with the endometriosis study that you may have seen on television. Me personally I had a bad experience with Lupron. Other women, however, swear by it and advise people to get the chemotherapy drug. Wellllll don’t try and say it is good or bad or you are bound to have someone get upset. As far as the study goes people say it is the oral form of Lupron. Don’t say it too loud for the people in the back because they will have a fit. 🙄
- People in the groups will post articles or google post and say that something they are dealing with is connected to endo. Now listen some of these are from credible sources and tells you about the studies they collected this information from. Sometimes that isn’t the case it is just something that was googled. Post like this scare women all of the time. Not fact checking or paying attention to where the information is coming from can leave you misinformed.
- There is a lack of support. Many women make shirts, have youtube channels, write blogs, or do something else that sheds light on endo. Well in some cases you cannot share your work. In the groups you can you don’t get much support. I could post a blog in a group with 25,000 people in it and get maybe 3 people who read it. Inside and outside group support is very slim to none.