Caregiver facebook groups are usually the first thing you go to when you are at your wits end. Your loved one has a new diagnosis and it isn’t pretty. You’re sleep-deprived, not sure who to believe in the medical world and you hungry for community. At first the facebook forums seem like a lifeline. People who UNDERSTAND you and your situation. People who GET IT when others don’t. And you feel like you have found a handhold in the unsteady world of caregiving.
But after awhile you begin to realize something. Many of the caregiver facebook groups you joined are increasingly negative. Critical. And even in an internet group you discover there is a power hierarchy. Some things are allowed and some are not. Say the wrong thing and you encounter piranhas. Say the right thing and you are a hero. You begin to have mixed feelings. Do I stay with it in exchange for the knowledge and understanding I’m receiving? Or do I ditch it for the cause of staying filled with hope?
That decision is yours. But I can tell you my experience.
- At first it was wonderful.
- Eventually I left and never looked back.
I met some great people in the facebook groups that are great folks. I still communicate with them. But I had to leave. If you listen to too much despair and hopelessness, your own spirit is compromised. Hope is an essential part of staying afloat. Mutual encouragement as well. So I left and started my own group. Granted it only has 3 other people and it’s rather inactive. But the payoff is that my emotional health is improved. I have zero regrets.
What are the the advantages?
- I met a few good people who didn’t feel the need to rant on all occassions.
- Caregiver helps were of great value. Which is why I started this site to share some of those
- I was with people who genuinely understood
What were the disadvantages?
- Most caregiver facebook groups are heavy, despairing, hopeless and full of rants.
- The power hierarchy. You might not experience it at first, but you will find it eventually. There is a hierarchy and the faithful posters don’t want to lose their position of notoriety
- It becomes emotionally toxic after a season and if you’re not careful, you will begin to go the place of increased self-pity.
So what do you suggest?
- Start your own group and set the boundaries from the beginning of what you will or will not discuss.
- Join a group for a short season to garner information that you need for your specific diagnosis
- Check this site often. I pay for this out of my own pocket to help you. If you have pertinent information to share let me know and I will add it. My hope is that this will be a positive resource.
Facebook caregiver groups are bittersweet. If more boundaries could be set in the groups they could be much more powerful than mere rant and complaining groups. If you join one, be wise about what is going in your spirit. You don’t need the added weight of negativity. Search for a group that encourages and strengthens one another. More than ever before, this is what caregivers need.