Warning: This is a controversial post.

When you first receive that devastating diagnosis, it’s helpful to have people around you who have undergone something similar. Support groups have helped hundreds and thousands of people feel less alone and more understood. It can help you heal.


Unless the group’s focus is actually on something positive or on something outside of your diagnosis, it shouldn’t become a long term part of your life.


Because it makes you focus constantly on that piece of you that is not functioning like it should. This has been shown in study after study to make your emotions and symptoms last even longer. Energy follows thought It makes it more difficult for you to heal – to whatever degree that is possible. Being inundated with meme’s about how no one understands you removes you from your IRL social circles and makes you feel even more isolated.

What do I mean by the groups focus being on something outside of your diagnosis? I mean, a knitting circle comprised of cancer survivors or an outreach program run by volunteers that suffer from fibromyalgia. This type of ‘other-focused’ group is good in the long term because your goal isn’t to get together and commiserate, your goal is to get together and contribute, it just happens to be with people who will understand if you can’t make it this Tuesday because of a flare up.

In an effort to understand patients better and to understand the struggles of people with ‘uncurable’ diseases like fibromyalgia, chronic fatigue, chronic pain and the like, I joined a few facebook groups. I figured that I would be able to better understand my patients if I truly grasp what their biggest struggles are.

Every group I joined was a depressing place to be. Most of them were 20,000 people or more. I didn’t comment on any posts, at all. The posts were cries for help, but when help was offered it was shunned or dismissed. It seemed like a competition for who has the worst day. The word “impossible” came up way too many times. There was so much focus on the ‘problem’ that when someone was ‘caught’ actually getting better, they were shunned. Shunned… for improving! While I realize that not every therapy is in everyone’s price range and that some people will get better and others won’t.. it’s rarely true that NOTHING can be done for a little relief.

There needs to be a safe space for you to share the dark days AND the light ones! Support groups that don’t feel supportive… aren’t useful.

You are NOT your disease. You are NOT your mental disorder. You are NOT your past. You are a whole person who needs some support and love. So, join that group for some support in the beginning. Understand that you are not alone. Spend some time with people that get it. Use your inner gauge. If you are feeling down every time you interact with the group, it’s time to break up with that support group and move on.