Support Groups can be a great alternative when you do not have the support of loved ones and friends. It is always nice to talk to other people that are going through or have gone through what you are experiencing. They can also be a big help in asking questions when you are newly diagnosed. Many of us learn the truth about Lyme disease in this way.
Helping Others Can Help You
I found it helped me to feel as though I was helping others as well as learning. It gave me a purpose and a focus beyond the illness and day to day struggles. It was also a blessing to be able to ask questions when I was scared or struggling. Many of us face a lot of fear when we are first diagnosed.
A Few Things to Keep in Mind
Most members of support groups are not doctors. With the best of intentions to help people, some members find themselves giving advice, attempting to diagnose, or providing treatment protocols. Be aware that while it is always good to share what has worked for you or someone you know, it is not appropriate or responsible to suggest that anyone self-diagnose or self-treat. Take what you hear and what you learn from people with a grain of salt. Do your own research, and always consult with your doctor.
Anytime you get a group of people together in one place, particularly if they have the comfort of hiding behind a keyboard, there will always be different personalities, different perspectives, and disagreements. When it comes to those with chronic illness, at times it can get intense. Let’s face it, when you’re sick, you don’t feel good, and you tend to be overly sensitive and grumpy. So, don’t take anything personal, and don’t get caught up in any drama or “personal attacks.” It will only help to make you sicker. Keep your focus on helping yourself and others. That is why we all end up there to begin with.
Online Support Groups
One other thing to keep in mind is that the people you meet online are on the internet. I have met some of the most amazing, caring, and courageous people I’ve ever met on support groups and forums. Some have become very good friends and an integral part of my support network.
I have also met some people that I would put in the “nuts” category. It’s good to keep in mind that usually, generally, your internet “friends” on a forum are probably not your real friends. Some may become that, but it is rare. Be careful who you trust.
Also, be aware of what you are posting. You often can’t remove it or take it back. And if you are posting any original work of yours, make sure you copyright it, so that you have full control and access to it. Better yet….just tell people if they are interested in it to send you a message and you can send it to them. You’d be surprised how quick people are to claim something as their own.
The other thing that can happen via internet Support Groups is there is always the chance of a troll showing up to ruin someone’s day. And some people are just the type of personality that thrives on drama. Don’t take the bait, and don’t participate in it. It never ends well, and it just doesn’t help anyone. Report any problem or offending people to the administrators, and allow them to monitor it and handle it as they see fit.
If Your Support Group is Causing You Stress
Start Your Own Support Group
I always like to recommend starting your own small and local Support Group. It could be your closest family and friends. It could be people in your town or local area that know someone who has or has had Lyme disease. It doesn’t even have to be Lyme specific. You could start a Women’s Group, or a Men’s Group, or find a focus that suits you and helps to keep you centered, happy, and fulfilled.
Look at it as though you are surrounding yourself with a circle of allies that will stand beside you without judgment and love you unconditionally and wholeheartedly, no matter how bad things get, no matter how much you struggle.
I started a Women’s Group once for the sole purpose of keeping in touch with my femininity. We met once a month. The only rules were that you couldn’t just bring anyone without first asking the group in order to maintain a safe space (in case someone wanted to open up and wouldn’t feel comfortable with a stranger). The other one, was only one person could speak at a time. Other than that, it was pretty open.
If you would like ideas on how to start your own, feel free to send me a message, and I’d be happy to help. There are no limits with this.
The important thing is to feel supported, supportive, and have a sense of community, understanding, and respect.
Surround yourself with a circle of allies that will stand beside you…no matter how bad it gets.